Adjustment

I certainly want to go home but I'm going to be slower than slow. I won't be called "sweetie" but I'll have to do everything myself. I won't be using a bedpan but getting on and off the toilet and bed won't be fun. I won't have therapy sessions but I'll always be concerned about my strength. In the end the pro's and con's aren't equal, home is where the heart is. Even if it seem like a mixed bag. Going home is the goal regardless of when it happens, this week or next, so it may as well be now. I really miss having my computer and youtube shows. I thought a television would be great but I'm not so interested. I guess one misses what one doesn't have.

Finding New/Real Connections

Today I met 2 professionals to whom I gave 1/2 of my business cards. Somehow I new eventually the right people would make themselves known. First was a woman who helps people get connected to attendant care services. She connects many others and totally empathized with my plight. She was happy to hear about Infobility and asked if people could contact me. Second was a social worker who works with another wing in the rehab center. She was impressed and was asked by my caseworker to enroll me with Res Rose Transit and assured me that I'd be eligible by middle to late January. I will not be stuck inside for the entire winter.

"Work on getting better."

People say that phrase a lot to me. What does that even mean? Is it about exercising as much as possible? Is it about praying and asking others to pray for you? For me it means filling my mind up with only positive thoughts and concentrate on the activities I'll be doing once I return. It doesn't work to focus on myself and my operation. If that's the case I'll just go crazy cause this dumb numbness is not going anywhere. Being here is also driving me crazy. Today I was so tired of the usual CNA dialogue that I just bathroomed myself! Why oh why would I concentrate on getting better?

A little bit of help is a really good thing

I was always a very hard thing to accept. My "no" offended many people and lost a lot of possible friends since that's a good way to get to know others. After this situation I know I am starting from wayyyy behind the 8 ball. I know at first if I went to get anywhere I must accept a hand or two. I am determined to change my mindset a bit and be careful not too get to used to it. I will find a happy medium.

Disability 101

Three times Hershey made my life harder because the people never took my disability into account. Rules made no sense and the concept of a wheelchair seemed to be foreign. In one case it was suggested that my wheelchair be left behind. WHAT? In another case they wouldn't transport it with me. WHAT? It felt like it would be baggage on an airplane- if it arrived in another town ....oh well. It seem so easy and logical to implement some lessons into the human resource training. The worksheet on the Ten Commandments of Communicating with People with Disabilities."

Sticks and Stones

Cutesy names stopped bothering me long ago cause I have to pick my battles. I am learning to ignore the "stuff" and concentrate on getting physically stronger. It's not going to change but my reaction can. It's like water off a duck's back. Furthermore, Select Medical won't support me so I won't fight air. I'm concentrating on how to manage my family. They're doting over me, negative and stubborn about what I say and I'm their only daughter so they keep holding on so tight that they're squeezing the life out of me.

Respectful Actions

The CNA's got me sooooo mad because I say please speak to me by my name. Occasionally they would but still treated me the same way. Now, O don't try to give everyone a mini sensitivity lesson. However, I've noticed that the same people who call me pet names hold respectable conversations with me. The wouldn't if they didn't have any respect for me. Also I do things like shower at 4am, sweep the floor when I spill rice, and return my ray. No other patient does that thus my actions shoe respect too. Lately my request was to see my file- they actually can't remember a patient asking to do that. Again, acting in s respectable manner

Trying a New Transfer

A message I've been repeating over and over is "you know yourself best/ you're the expert on you." I have been learning new ways to do old things, exercising body parts I didn't think mattered, and trusting people more. 1) I haven't used a board to transfer in a long time; it's long, heavy, narrow, and thick so I expected it to be more of a problem then a solution. It turns out that in some cases it does help, especially when I'm being helped by the CNA's. I was sure my legs, which haven't worked in 30 years were useless. Instead I understand how they do effect my transfers. Some exercising of them is a good thing. 3) I have managed independently for years. No one was around at all so I figured it all out or it didn't get done. I am starting to allow CNA's & therapists to do it their way, "if you can't beat them join them." Sometimes I surprise myself and other.

The Silver Lining

I used to be the picture of that because I knew nothing else. Negative begets negative and I have no idea how to change it. I learned that there's a flip side to everything and I started to consciously think of how things could be worse then realize they aren't so bad. After practicing this over and over it became automatic. Suddenly good things began happening and I became amazed and thankful over and over. I tried to figure out what actually changed so I could ensure continuation of the positive and not slip back into the big black abyss. So it's crucial to steer clear of the negative and welcome the positive.

You Know You

Many times professionals insist on following the standard procedure even though it makes absolutely no sense for your case. On a few occasions people tried to show compassion and lied to make you feel better. That made it so much worse. 2 example are my getting to the hospital and my getting to the rehab. Story 1- The surgery was scheduled for 5am so I figured I'd go to the hotel the night before then take the hospital shuttle which goes there anyway. Suddenly I was told the shuttle won't pick me up nor would it go that early. WHAT? then some no-name lady said don't worry just do it anyway and call this number or this number it will be fine. I said all along I'd bypass the hospital and sleep sitting up. Guess what we did? Story 2- Transport to the on-campus rehab center was more than willing to deliver me but not my wheelchair. WHAT? I knew the shuttle would take my chair with anyone but me (who needs it) inside. The caseworker said they'd make arrangements as soon as possible. Not good enough because no one knew when that would be. So I instructed mom to sit in my chair and take a shuttle ride while I went with the EMS. We all arrived at the same time and all worked out.

A Crucial Component

There are books and books about the importance of a positive attitude and people make a living speaking about it. I have spent most of my life surrounded by the opposite message and where have I gotten? Therefore I am taking a very firm stance in the opposite direction. At this point it has become a big part of my persona automatically. That can't be a bad thing though it's not going to cure me of my stenosis. It does help with my pain level. When I'm asked about the pain level I have to think for a bit cause it's not something I focus on consciously. That is because focus must be on therapy, transferring over and over and over. I am at the point that if someone is negative, like my parents, I ask them to leave.

Learning

I have already learned a lot and it's only day 7. Here are some of what I picked up thus far...1) a positive attitude is crucial; 2)if a problem has arisen and the person does not sound like they have a solution start working on one immediately; 3)do not be around negative people; 4)just cause transfers have been done a certain way for years it doesn't hurt to try a new way; 5)respect isn't always through words but by actions; 6)continuously being upset by being called a cutesy name must be ignored, otherwise you'll go crazy; 7)non medical personnel who work in a hospitals are clueless about disability; 8) it's okay to accept more help than you ever have before; 9)the best way to recover is to concentrate on other things while exercising; 10)medical professionals are sincerely interested in connecting people with my resources. Now that I'm up and moving I will concentrate one lesson each day. I'll probably have 20 before I am on my way home.

Insurance

That's the real entity in charge. People who have no idea what is needed for a person who has a disability to begin with make big decisions. I am requesting to be admitted to a hospital the night before the 5am wake up call. Why? Aside from the fact that the hospital will NOT transport me from the hotel down the street; my condition has really declined and a few hours won't be such an impossibility to arrange. Since I was warned of the out of pocket expense I am armed with a letter to the director of admissions justifying my request. I am sure most people just "hope for the best" but not me. I am all about anticipatory measures. This will surely raise some eyebrows. I will be remembered- hopefully in a good way.

Disability?

Hospitals are unbelievably unfamiliar when a disability question is posed! They refuse to drive me 3 miles from a local hotel to the hospital; they have not idea what to do with my power chair once I am put in a gurney; they give incorrect answer when asked about accommodations. I was even asked, by a pre-registration staff, how I feel after walking a flight of stairs. WHAT? If medical professionals are clueless but considered to be the experts that's pretty scary... and harmful. I have been given medication that has made me even weaker than I was to begin with! Sensitivity training for doctors, nurses, and paraprofessionals is crucial but of course no one would admit their lack of knowledge. It's so sad because the person is really not respected or even consulted but the individual is the REAL expert.

Meditation

That is my next project before I get this surgery. I never did it before, I never thought it would work for me, and I never really learned it. I usually have the opposite problem- too many thoughts in my mind, not clearing it. I guess it is like anything else, it can be learned so that's what I'm doing today, tomorrow, and Sunday. Meditation 101. I have a cousin who does it regularly and she suggested some websites. I am going to buy a book and read it up till the last moment. I think this is the way-focus forward not on needle pricks, invasive tubes, or the upcoming pain. That is a waste of my energy, if I can just block it all out and some how be outside of my body (on the sidelines), it will all be more manageable for me and effective for medical professionals.

Helping each other

The girl that will be my attendant in 1 month has been a physical therapy student for years and conducts aquatic therapy programs at a local recreation center. She spoke of going to school after she graduates and eventually having her own therapy business. I was so excited because I could she it was something she had limited time, money, and business knowledge but she'd be an amazing director. Her vision was to offer non-traditional therapies (aquatic, music, nutritional, animal)as well as the standard physical modality. I can figure out how to get it approved for veterans then do marketing and find funding. It would be called The M.A.N.A. Center and will provide her some real income and me a really good way to empower consumers. The best way to help oneself really is by helping others.

Strength comes from the inside...A Fable

The sun and the wind quarreled as to who was stronger. The wind said "I'll prove I am. See the old man down there with a coat? I'll get his coat off quicker than you." So the sun went behind a cloud and the wind blew and blew till it was almost a tornado. But the harder it blew, the tighter the man clutched his coat. Finally, the wind calmed down and the sun came out smiling upon the kindly old man. Presently,he mopped his brow and removed his coat. The sun told the wind that gentleness and friendliness were always stronger than fury and force. Sometimes it is the person in the wheelchair who can barely move that is the loudest.

Disability booklet

"Do-It-Yourself Disability" is what I will be sharing with patients and professionals at Hershey while I have surgery. Not some downloadable attachment to put together or delete. Not a website to search for my 25 programs just something simple, pretty, unique, and practical. It was suggested that I repackage Infobility so that's what I'm doing. I'm excited that I'm going to try this method. I'll ask to speak on the 17th at the support group. I'll show the 10 Commandments too and get consumer feedback. No more presentations for employers or strays focus will be on empowerment for individuals and in the end I will have employers requesting my program. Slow and steady the turtle finishes the journey.

My Formulary

A positive attitude plus technique is the way to achieve success. It is important to have a good attitude, negativity can really cause difficulty. However, all the positive inner messages in the world alone may not be the solution because there has to be an objective component at wok too. If a person is not yet knowledgeable of the way to accomplish something, that is a big problem. Therefore, one must look at the "how" something can be achieved. If a leg falls or a body loses its balance a successful transfer will not happen. On the flip side, once a person can think through a scenario and continue to perfect it by practicing, it will become easier. Attitude + technique = a formulary for success.

Networking in Hershey

I was never a fan of attendant care because I believed if muscles aren't used they'll atrophy. What if they suddenly disappear? It's such a scary proposition but I will exercise as much as possible now, and after, so I can manage to at least do what I did- I will have to because it will be a necessity. Mind over matter will be an important part of this so I figure networking/marketing will be a positive and productive activity to occupy my mind. When I arrive the night before I'll be a mailman and put information under doors at the hospital.

Operation Infobility

What an interesting turn my life took! What better place to infuse my disability program then at Hershey Medical Center and rehabilitation Center! Helping someone else and working together always makes results more effective and efficient. Furthermore, hospitals & colleges are more receptive to those who've actually been there. So now that's exactly what I'm doing and this will be a successful route. I can't do a thing about my medical condition but I can network and share ways to help others who have disabilities. I can't wait to see where that leads- maybe I will reserve a table at the Abilities Expo; finally I'll make a difference.

Collaboration

I always believe that helping another helps oneself. Once again I tried to connect with someone and I'm going to be pleasantly surprised. Her beautiful website hardly gets shared and my biz cards are all over Lancaster and beyond but show a horrible simple website. Now we will have a very comprehensive informative that will cover so many facets of the subject- vocational, financial, individual, presentations, and a do-it-yourself disability manuscript for anyone and everyone. I am extremely excited so who would have known that a huge medical problem resulted in the birth of my dream disability awareness business.

Alternatives

Should a person in a power wheelchair go for cervical surgery? I can't imagine I would not suddenly have neck pain, headaches, and communication problems (in addition to other things). I think I should at least try some holistic approaches first. This is just too risky and I'll not be able to reverse this mess- just go on a surgery spree. There are many good anti- inflammatory foods so I will try them for awhile- cherries, salmon, salad, grain fed beef, olive oils, cinnamon, cumin, broccoli, cauliflower, green tea. I know the physical therapies are really not the answer. A lot can be said for positivity and perseverance too. If a person is disabled anyway the base line is totally different- no one really understands if they don't live it.

Plan B

"Making my mess my message" is the best way to go so that's how I'll look at the flip side of my spinal stenosis. I will be going for continual therapy so I will share my pamphlet on "The Tenacity of Hope." I won't be a stranger entering but rather a consumer who will need to follow the advice I write about. Also I'm going to have a real website to showcase 3 areas: "Vocational Venues" and "Disability Dialogue" Just like my biz cards claim. Eventually I will find someone to be the front person and give speeches so I can do what I do better- plan things. I'll also focus on Team River Runner and get others interested in a bike tour to increase awareness of disabled veterans. I am already excited about this- I just wish it didn't involve some personal scary surgery.

Possessive Parents

My arthrogrypois lead to scoliosis now to spinal stenosis and a sudden operation. I know I will be able to handle it but what I'll have trouble handling is my parents taking over my life. I fought so hard for independence but when parents see their adult child as a 'helpless handicap' it makes recovery so much more difficult. Attitude is more than 1/2 the battle and can make the entire thing worse. That also makes empowerment of people with disability difficult, then the child remains a child and the life quality is limited. I need to find a half - way point, perhaps I recruit others to intervene. Then I can take the personal lesson that I learn and use it to help others. I'll make it into a case study for future reference.

Compliments & Complaints

If I believe someone has done a good job I will write them a formal compliment. On the other hand if I am suffering from someone's negligence I believe at the very least they should hear about my struggle because of their negligence. I hate being underestimated. When it comes to my wheelchair I continue to suffer and now it had become a pretty serious medical issue. The man from DME clearly did not care that he did not specify the chair I needed. He told me more than once I'd get the exact same chair because otherwise Medicare would not send anything. He did not even bother measuring the floor to seat height needed. When the incorrect model came he pretended to be concerned and had his servicemen try to lower it 3 times. When it was still too high he canceled his service to me and feigned "the problem was due to his company's denial of my insurance and an environmental change that made prior measurements inaccurate." I replied with "you and I both know the problem began the day I got the chair." He quickly refused to deal with me any longer. Since I still don't have a correctly fitting cushion and neuropathy on my entire left side it's time to contact his boss.

PA Waiting List

I have been interested in the housing issue ever since I read the 2 grant topics through the PA Developmental Disabilities Council. I then listened to a professional who used to work on that issue at the state level. Now I have a much better grasp of the knowledge needed. The "Why" always boggled my mind (How can there be 13,900 desperate people?). I just got another notice about writing and visiting legislators about the issue. I am a good writer so I wrote to someone and offered to transcribe people's stories and send them to the right people. This idea sounded good- it surely couldn't hurt. Now I'll see if my suspicions are confirmed; I surmised that these parents just didn't think ahead and most are overwhelmed.

vocational venues for veterans

That title even sounds like it goes together. I have a new way to help veterans and the 13,900+ people on the PA Waiting List. I met a number of employers seeking to hire veterans. I went to the Veterans Expo and saw so few people. I know a few professionals who run programs and offer vocational and residential services so I will contact them. I will also follow-up with the employers who I met to put them in touch with each other so perhaps this will result in some qualified people getting jobs. I am joining a canoe club where there will be many more younger people who will hopefully be interested. I also want to start a pets 4 vets program. Since one replied and I met a girl who knows how to do it (now I just have to find her)I have a starting point.

Pets 4 vets

I found my charity and it's on the Marine Corps Birthday- how perfect is that! They are a nationally known 501C3 so they would qualify for the grant from the Developmental Disability Planning Council. I went there is person for that so now I know why I did what I did. Hopefully the person in charge will contact me later today and we can get started. I had in the back of my mind that there was something I could collaborate with, that would need my help as much as I would need theirs. Life does come together but it takes a lot of time for that to happen. Now, I can probably share my "Tenacity of Hope" booklet and get moving on Infobility too.

Hope for the future

In a way today shows that inclusion is possible and meaningful. If we can elect a president who was never had political experience we can hire people with disabilities who have not had much job experience. Sometimes it is important to get new perspectives and a person who may,on paper, look like they can't succeed but in real life that message doesn't always prove true. History shows many people who were successful in spite of their handicaps which may not be because of their minds, bodies,or behaviors. Furthermore it is true that just because a person acts inappropriately one time, the assumptions should not be made that (s)he will perform that way. Many people were horrified by the way he depicted a reporter who had a disability; that can't be considered insight to his character. Just because a person did not want help opening a door, that does not mean that the person doing the asking should decide to never offer that assistance again. There really are similarities.

Futures Planning

This is a new concept for most people, especially parents of kids with intellectual disability. I joked that it's not rocket science; after a few hours of reading and summarizing it isn't. I'd like to work on it with the lawyer who was interested in collaborating on programs. She had the program planned and was going to write to support groups but never contacted me about this. I always talk about taking a different angle in my approach- this is it. I hope that I can make some things happen for parents. It looks complex but doesn't have to be. I want to then refer parents to programs like "Visions for equality" in order to learn more. It would be a good thing for people to understand. It's mainly about families and friends planning a quality life for those kids who usually get stuck in the system. There are many charts, and colorful maps but it is just about thinking ahead, thinking outside the box, and getting natural community supports involved in the process.

Home Depot

The representative did not attend the panel so I called and asked the problem. She quickly stated that her schedule changed. I was unhappy that she could not be bothered alerting me about it. I wrote a nice letter to the site manager about her absence and asked to show the DVD on communicating with people with disabilities. I am having second thoughts about showing it but it's already written so maybe I'll share it. The other location has kids and that's the perfect venue to something disability related so I will email the manager and as if I may do something to "spread the word." There's no harm in trying, right? There are other ways to increase disability awareness.

Communities That Care

There is always another "door." I was told of a really good groups so I decided to learn more. There is a Non-profit who works to engage kids thus decrease depression. Also there is a component that includes kids with autism in which I was especially interested. The problem - not a new one) is that they have no money to train parents in that category. I decided I could be helpful. I know companies through Society of Human Resource Management that may have an interest in learning about this program. I will spend the day finding companies who are members of SHRM who may be interested. I will also create a bit of an explanation to offer companies. Hopefully my efforts will pay off- literally.

An idea

I have to be part of a larger company.... or store. There's a gift/gallery shop run buy a lady who has Multiple Sclerosis. I wonder if she'd display my flyers? She seems to be the perfect person, she has a store, she has a disability, her proceeds go for charities, and I'm sure my program would fit in with the others but not duplicate anything. I will stop by and ask if she'd consider displaying my information- it could not hurt. I will also visit the restaurant who was interested in Infobility at one time. This needs to take a different approach and it needs to be done individually.

Halloween Horror

Kids rang my doorbell but I couldn't get it open. As it is people ignore me and now I don't even open my door on the biggest candy night of the year! That's a Halloween horror! So I wrote the office to ask if they'd share with others that I want to have a Halloween redo so I can make up for not participating. Finally I will meet a few people. I hope people come, I don't want to be disappointed all over again. This could be my opportunity to be friendly. Thus far I have not and I feel very isolated. I really want the chance to turn it around.

New path

I always thought that the key to Infobility being successful is being part of a bigger company and having regular planning meetings. I am going to talk with a man who runs a well established business and is very involved with community activities. I want to discuss the benefits of having a small program like mine as part of his business. He can use this news to inform his customers as well as the public as a way of generating interest for me as well as him. I want to continue to do some disability programs but also implement "Working on Wheels" on a small scale; I think it will gain momentum and prove to be a fun and educational activity. Large program attempts will be put on hold for awhile. The other idea is to have small programs at popular places in the community starting with the employers who did not show- Home Depot and Go N Banana's. I can turn this bad experience around.

Connections

That is my method of choice. I don't know a person as well as (s)he knows himself. The person has more of a stake in something if (s)he performs some of the work independently. Also their should be a certain level of motivation. On the other hand too many people say "it's not my area" and end the conversation. One may not know the solution but could do a bit of research to find the right path. When a business is just starting out, making connections is crucial. Everyone knows something another does not. Everyone knows someone different. One never knows how valuable a connection can be. I always keep this in the back of my mind and often share that simple fact with others.

Futures Planning

Disability Dialogue is spreading...even if programs don't go exactly how they are supposed to the inclusion message is being heard by more people and in more places. Next week I'll meet with a parent regarding "Futures Planning" a topic that is all about inclusion and securing a quality of life for individuals when their aging parents (the main caregivers)aren't around. This is something that has been introduced but really to get flushed out and moving. It has been discussed but presentations are no yet underway. A parent from Ephrata and I will be planning at least one group on this issue. It may have some kinks but they will get ironed out as we go forward. It fits perfectly as an Infobility program.

Employer Recognition

Today is "Making Work, Work for Everyone." I just want to honor Disability Employment Awareness Month and appreciate employers who have hired people with intellectual challenges. I do not want this to come off as some sort of exploitation of people with disabilities. After all, I belong to this population. I just want to increase inclusion in Lancaster County. I think this will eventually happen with my version of the Ice Bucket Challenge. Someone from a big company has asked to do "Working on Wheels." I am certain that once results are put on social media, others will want to participate. It's is a great way to simulate disability and thus not be fearful of it. There is a man who does facebook videos on staff so that will happen without my spending much bucks for it. It's time my unending pursuit of Infobility shows results.

Angles

There are so many service agencies created in the name of helping people. Many start off well but are over whelmed, underfunded and the staff are just burnt out. Others resort to the same old, often, unsuccessful techniques because of government constraints. Once in while there are a few that have new, innovative ideas that look at problems from different angles. When that happens from the start there are different types of solutions. Once people who are not accountable to the system view the issues new angles are developed and outcomes considered. There are existing agencies that can make change happen but it is necessary to start from an entirely different perspective.

Housing

I attended the preproposal on that topic. First of all there are two. Why separate it into a demonstration project and an advocacy project? I read most of the 19 topics and I don't understand the need for a separate grant. I think they should just award multiple projects, housing is in such dire need. Another issue is the logic to the criteria. I understand the mandate to involve consumers with intellectual disabilities in all of the processes. However, I can't imagine that a consumer is going to be actively involved with the closing of a house. Another issue I wonder about is the mandate to involve different disparate populations. Most CIL's do not work much with veterans or Hispanics unless they have disabilities. The third issue is the mandate that the awarded agencies must collaborate. Therefor, if a center from Erie gets the Housing Advocacy grant and a center from Bethlehem gets the grant for the Housing Demonstration grant on what do they have to collaborate?

Opportunities

I believe if you make your own you will get noticed. Most of the "working world" finds a company to hire them and that is the opportunity. Then there are those who march to the beat of their own drummers and make their own opportunities. There are those who fall into the category in between who are seeking company employment but until they reach that point they create something during the time in between. That project gets noticed and then in turn they do also. I attend as many meetings and programs in my field as possible with the goal of finding a company that believes in what I am doing. There are at least three benefits to taking that route. First, you will have something to show a person which may lead to a company during your downtime. Two, you will be too busy to be too depressed. Third, you show your dedication since you are doing real work while you aren't traditionally employed. They say that finding a job is a full time job, it is, but why not have the employer come to you because of what you are already doing. Make your own opportunities. I do that by conducting disability presentations, projects, and events. One never knows but it seems to be working.

Speaking

The little speech this morning for "Lighten Up Lancaster" May lead to a few more contacts I can collaborate with in the near future. It was a big deal that they even included disability in with their other programs; it's usually overlooked. People should at least hear about it and I think it would be nice to push the "Working on Wheels" program. I see it being an ongoing activity that can incorporate a lot of people from different organizations and businesses. I am determined to figure out a way to start it. It should not be too hard; if I could just find a few teens to roll through the mall it could become quite interesting. I also plan to create projects with the gran topics. That will bring Infobility in the forefront. Tomorrow I will meet a slew of other companies and hopefully one will participate in Friday's recognition program since the 2 I counted on were never asked.

Meetings

I goo to as many appropriate ones in or near Lancaster as possible. I just attended one about a new initiative to start dialogue on mental health issues. There I met an ex Col of the Air Force and I was able to interest her in a grant for veterans. It's great to be helpful and hopefully be able to connect with her on a professional level. The concept of Change direction is super easy and logical. The more people who talk openly of mental illness, the better off we'll all be. In most cases the real cure is simple- just bring it up. Both sides must not be afraid and it can save lives; suicide is a huge issue. I will alert people who I know that I'm sure will get involved. It will help me meet more good people and eventually I will spread the idea that people with physical disabilities need that kind of help.

Perspectives

"Working on Wheels" is an experiential program to understand how to manage in a wheelchair. It is about how much a person who is able to accomplish despite not using legs to get around. I have not done it in awhile, my focus is disability awareness programs. The local newspaper is interested in talking with someone who participated in the particular program. I asked a few people and reactions are interesting. I hope to dispel myths with this activity. If the event is going shopping the focus should be on having fun. It's not meant to be uncomfortable or upsetting, I want to learn how to approach it differently and ease society's minds on the topic. Perhaps if people do it together in groups of friends but that could increase stranger's curiosity and likelihood to stare. I must find a better way to do this- maybe this is the key inclusion.

Sharing funding

Today I contacted three different people who ran organizations that would fit four of the 19 grants. Each person was happy to hear from me and promised to inquire then start the application process. I am done finding funding for people. I really hope at least one of them get approved Each of them are good people and this will put me in a good light with each of them. "Veteran Supports" this man is in Altoona and is about the only living person, who my friend the Marine respects. I told him I wanted to start a Wounded Warrior but the organization didn't want that. He suggested we start something similar. Finally me friend may become motivated again. "Civic Engagement" this man is CEO of Bayada and he wants to bring the habilitation program to Lancaster. He promised to keep in touch before today; now I'm sure he will. This would be another outreach experience, I'd love it. "Meaningful Day" this man was concerned about the mandated change for the sheltered workshop to become more inclusive. I told him that I had ideas for making that happen.

Editorial

since I can't count on the newspaper I wrote this article. I actively believe in gratitude, so when someone does something in public that really helps me I often say thank you formally. In honor of National Disability Employment Awareness Month there will be a Lunch & Learn event for the public to recognize some of the local employers who have hired people with disabilities. I realize the law (Americans with Disabilities Act) mandates equal hiring practices but if we want more employers to go the extra distance for people who may need some extra understanding then shouldn't it be both ways? If you'd like to join this unique celebration downtown let me know.

Progress

Last night as soon as I got cleared to enter the Giant Arena in Hershey to see Carries Underwood I was asked to show my ticket so it could be scanned. The employee who did that job had an intellectual disability- wow it made me feel so good. Not only was he working in the community but 11,000+ fans saw him! That was such wonderful exposure for the disability employment movement! It was a wonderful way to start National Disability Employment Awareness Month, which is all of October. The end of the month is my own program and I will do my best to reach out to the man,his job coach,the agency,and the manager of the arena; I would love for them to speak. After I learned that Erie will be location of the Pennsylvania Disability Employment Summit I said "I would love to have a mini PADES" well, things said in gest are said best. I'm going to make some calls.

Road Untaken

My favorite poem is "The Road Less Taken" by Robert Frost. It's my philosophy in life if you don't succeed one way take a step back and choose a different route. I spent decades thinking I needed to get the approval and support of agencies for my disability awareness programs. Not only did that not work but it did not work time and time again. I then decided to focus on connecting with businesses and groups with no relation to disability. I am having success. Whether it's the Society of Human Resource Management or The Mix, an afterschool activity for at-risk youth or even Representative Sturla's office, the results have been so much more positive than the typical route. Why? It's wrong that the answers lie with the community at large but I am eager to help these wonderful groups grow. Possibly it's because they aren't always fighting for funding.

Homefields

What's really needed is housing for people with disabilities. Parents are going to "go" before kids so if the kids are sheltered and not given the tools necessary to manage or at least seek the appropriate services they need do a huge disservice. There are so many on the "waiting list" that you feel like there's never going to be enough housing. Supposedly, the state is putting money in this issue but there really is none available and it is extremely expensive and it's for a lifetime. Therefore I'm going to do my best to get Homefields Farm duplicated in other places. Where do I start? There are so many components to this unique program vocational, residential, business... all I can do is just dig in- I have to start somewhere. The director took a long time to talk with me and actually said I should find some parents who need housing for their adult kids and just work from there. This also helps me find a future family after mine if gone. This an area that is overlooked in a major way so I'll be needed in this area.

Membership

It's my chance now. I have belonged to a local organization for years and never lead a warm-up activity or addressed Infobility at a meeting. They are seeking presenters to cover the subject of diversity/stigma/inclusion. This is my wheelhouse and I really hope the directors see this. I have presented to many different audiences (and I live it) but this one must have a different kind of program. I will discuss the work I do and offer factual information but it must be upbeat and positive. I will focus on solutions to some of the challenges people with challenges face. I'd look at the workplace and the community because they are the most important areas. Inclusion involves strengthening society to include all of its members because everyone has something to offer. If the speech is 1/2 of the program it will be quite easy to plan; people think of African Americans, refugees, and other populations before disability there needs to be more education. This would be a good venue since it's a popular meeting for the Lancaster community.

Patience

This is definitely not my strong suit, however; I am going to become a member of the Lancaster branch of SHRM. This is a human resources networking group. The target audience for diversity programs and employment. There is no need to reach out to all 67 businesses at yesterday's job fair. My card may not have survived anyway because there were 100's of job applicants there with their resumes. Also it was important to work harder on the planning the program I scheduled in the afternoon. It went well and I may do more for other police departments in Lancaster and be invited to speak briefly about my program at a Countywide meeting. Patience does pay off. I did not attend the Spinal Cord Injury Support group in Hershey but there's one next month. I did sign up for VISTA. That's a big volunteer program where I will meet prospective groups to speak with and in return help.

Employment

Another means of meeting employers to recognize for the event next month. I plan to visit the Careerlink Job Fair. There will be 67 places representatives and I will share my business card, ask for the employer's and explain that I would like to reach the human resource department. Perhaps they will be interested in my unique approach rather than presenting a resume. When I do the follow-up I will include the diversity training program offered through Infobility. This event will be more logical than to run down to the Hershey Medical Center in hopes of finding a few interested consumers. I will attend the group next month and bring information to share on how people can get involved. I'm not sure there will b e (m)any people from Lancaster there anyway.

Persistence

It pays off because I met with a reporter who liked my idea and will write a story on the October project. "Making Work, Work for Everyone" is a wonderful way to recognize October as National Disability and Employment Month. People like to be recognized and have articles in the paper so I will enable that to happen. Now, I have to wait until I get approval for OVR to get on board. If not I do have a Plan B, just doing my usual type of program. I will emphasize employer information rather than have a forum which will be more interesting and lead to more employers "jumping on the bandwagon. I also found a man from my temple who knows people with big names hopefully (just 1) will be receptive to lending his name to Infobility as a sponsor. Then this program will become all it was meant to become. No longer will it be "the little engine that could" so to speak it. I will have reached the top of the hill and it will then all be downhill. It will have taken 30 years to get to that point. No overnight success here.

Programs

Tomorrow is a program with the police during the day and a wheelchair basketball game with teens at night. I expect that this will be a good experience for all involved. I am going to place this blog on the back of all of my business cards because the wordpress is too short. I have had a lot of experiences "spreading the word" but it has not resonated because I must package it differently. The key is to offer a lot of insights and encourage participation; In the past I have not done things that way. There is always a way and giving up is not one of them. I have a new idea and I will work on implementation. I want to have wheel challenges. People spend some time in a wheelchair (one person at a time) and then there will be discussions both individually and with a group. This will reach the community more effectively.

Advocate

I was so angry with Invacare that I was ready to start a class action lawsuit. I investigated and discovered all sorts of shady things they got away with for years...and was not too interested in fixing. I wrote to the professionals featured in their articles and disability related professionals and more. I wrote to Independent Living Councils in 52 states asking for their consumers stories and planed to write many many more letters. Then along with all of these letters I got a long letter from the lady at the complaint department offering to pursue this matter with me toward a solution. I decided to set it all aside and focus on other more progressive and more general issues that will help more people and improve quality of life for people with disabilities. Again I should not brag about my disability advocacy skills.

Vacation

I went to Delaware after booking an "accessible" hotel room. The stress wasn't in the drive t o or from the area or even getting around- it's using the bathroom. How crazy is it to have to go to K- Mart before I go to sleep at night and Cracker Barrel as soon as I wake up in the morning? I couldn't brush my teeth nor wash my face, at least I was not scheduled for a room I could not get inside- I've had that too. I learned the hard way to not book with a vacation program and I don't book with a call center because they don't even know the room availability and the hotel front desk does not care to check the reservations made by the 800 number. I've fought and had to relocate to other places so many times that I don't even like to go away. So I hope that I'm located near a place that has a restroom in the main building or places that are open at odd hours in case I can't use the bathroom. In this case I am not being a good advocate but sometimes I must choose my battles and this time that wasn't one of them.

Inspiration

Today was a full day of Ted X. All of the speakers were people who helped others less fortunate than she. One lady took in 55 refugee children from Nepal. Another lady created a dress that measures brain waves. A third man spoke about how saying "yes" to an offer without thinking about it really made him grow. That applies to my plight because I keep second guessing myself and limiting myself. I must believe that I Can find consumers and advocate for them and against Invacare. I CAN grow my disability awareness business. I CAN get some good people to work with me on Infobility. I CAN also find an agency to work with me so OVR will fund me. I must be positive and I am very glad I got involved with the Lancaster Ted X program.

Website

I must create a website for Infobility; wordpress, which is on 1000 business cards, isn't good enough. 2 weeks from now I have a vendor table and no one will give me credibility. I must whip something up tonight, this is why no one remains interested in what I can offer. I had 2 good websites but no contacts because I didn't have good connections, now it is just the opposite problem. Maybe I'll use the guy in Harrisburg I met 4 years ago. It's fun to do it; I don't know why I'm procrastinating. This is the reason I'm not getting people's attention. It's all in the appearance.

Editorial

My article on the deaf motorist killed by police resulted in one call. I didn't even answer it so I guess it was not considered a big deal. I think there is more to the story cause it is not likely that police would want shoot without just cause. However I tried looking for follow up and couldn't find anything. I guess the world is on to bigger and better things. Sad but true, I hate having to add some fluff in order to make this topic more interesting but if I don't it won't get much attention. I remember going to the Today show in hopes of getting a segment on my booklet "Tenacity of Hope" then watching the day before and seeing the attention the story got in which the man sent his mistress flowers and his wife got the bill. THAT is our life; so sad.

Vendorship

I was chosen to be a vendor at the Everyday Lives Conference in Hershey in two weeks. As a result I am encouraged to attend this $300 event for free. I will take copious notes at each of the workshops I experience and expect to meet some good people. The topics covered are important for every age group and population, not just children and parents experiencing autism. There are similar threads regardless of the disability, age, socio-economic status, race, onset of challenge, geographic location, etc. I wish people would see that and not merely look at the funding stream. I will have an open attitude and meet as many professionals as possible. . I must also make my table physically appealing pleasing or no one will stop by. The content should be the most important aspect but people will not ever notice it if it does not look appealing. I am definitely on the right track toward my goal of disability awareness. after 30 years I should be.

Deflection

The hardest part of advocacy is knowing you're right, having proven you're right, and not being believed. The lady from InvaCare assigned to my case just informed me that based on my serial number, I was given a chair that is 17 inches high, so there should be no problem. She knows I'm right so she keeps coming up with anything and everything to avoid taking responsibility. At this point I will have to come up with threats. Actually actions I can easily take and they will be damaging to InvaCare. First I know for a fact that NuMotions, a huge customer of InvaCare is considering canceling their contract. I would be happy to send their CEO the letter I sent to the FDA, CEO, Newspaper reporter, and a number of other key people. This sort of thing happened to me before with a big rehab company blaming me for bed bugs and making me pay for the spray treatment. All I did was tell them I would inform the Attorney General that their facility was not clean...I was completely exonerated. Same thing- all I have to do is send a few more letters to FDA and Nu Motion.

Determination

I'm sure I'm not alone when I think of how I managed in my adult life. I learned to look at the flip side because it exists always for absolutely everything. My view is that one must think of how much worse something can be, then realize that the way it is, is not so bad. Soon that because an automatic thought and it was always a welcome one. Everything counts, I learned from, every single one of my mistakes. Whether it was employment problems or parental problems. That's the only way I could have survived my life. I tell people that I do what they do just a different way. Sure it's the harder way but I look at it as the more interesting way. Sure I will get to see my niece but it will involve a train and a bus rather than just a vehicle or getting a ride with my parents (that one's definitely out). I am planning on doing disability programs for police departments. I was shocked when my boss wrote me that he was proud of my doing that.

Condescention

It's horrific when it's being done by one's own parents! They will never learn so I give up and ignore them. That works until they start telling you, you should not do something that you know you could. My 1st cousin was just born and there's a Jewish ceremony for him. I was asked to go and I fully expected to, then my dad gets on the line with why I should not make the long and dangerous drive. I got tired of listening to him drone on and on so I just agreed not to attend. Then in an email Mom backs him up and says you can see the baby at Thanksgiving (when it's convenient for everyone) so I just ignore her, too many good things are starting to work out for me. I missed out on 3/4 of my life because they decided I should not do something, then I lost all confidence in myself as a result. Well, you know what? I WILL see the baby and I'll see him before they will. If her brother doesn't call me to hear my plans they will be answering the phone and I will be in the yard tomorrow.

House Party

Last night I went to someone's house to show the disability awareness video. It's an interesting way to spread the word on disability. The person was so thrilled with the dvd that she showed it twice! Growing awareness is literally a step by step process. I couldn't believe it, he husband of the house made a ramp for me so I could get in the house through the garage! I'm going to buy the ramp; it will make my life a lot easier. I don't even have one to get in to my apartment. I must park horizontally over the curb that they refuse to cut for me. THAT is a potential fight but for now I am letting it be. I pick my battles carefully and that is one that is quiet for the time being. This company makes millions of dollars because they are part of a huge industry that is on the stock exchange.. They give the office staff money for renovations and tell them that if they don't use the money thy can keep it for themselves as a bonus. I'm sure they would not want that bit of information to get out.

Progress

I received a long letter from one of the people involved in Invacare's quality control issue. It was just what I sought to read. This man assessed my situation, gave me so information, and asked what I wanted done to solve the situation. He also asked me my reaction from the technicians. That will be an interesting response since the reps who I spoke to basically chastised me and asked "why would I care?" That will be something he will not expect. The man who said that will regret it. I may as well request a lowered seat, that has been the problem along along and it will continue to be for the next 5 1/2 years. I knew someone along the line had to have the magic combination of knowledge and respect.

Wheelchair basketball

I arranged a game last week at a teen center. It was not really a game but an experiential activity. It worked really well (after I was told "NO" about 22 times when I asked to borrow chairs. The director asked to have an actual game which I'm working on. This was not only a good way to reach otherwise uninterested kids but also a health way to introduce inclusion hence "games not guns." I am not a proponent of talking and meeting, there has to be a next step to engage these at-risk kids who are more bored than anything else. Once the are doing something fun, constructive, and meaningful, then we can talk WITH them about the usual racial concerns. We solved a little of the problem without even trying.

Networking

If the topic is timely, appropriate, and/or glamorous there is a higher likelihood people will come. By glamorous I mean a topic that's interesting to most people such as dieting and exercise. Disability is not an issue the public embraces rather they avoid or shy away from. The challenge is to make the topic more desirable without changing it all together. One idea is to include food, that is usually a good incentive to attract others. Another is to offer something to people or combining with an existing, program that is popular. It is easy to offer suggestions but I am forever concerned about attracting people. I believe in collaboration so I am working with a lawyer who does special needs trusts in hopes of growing both of our networks. I am also considering creating a board in which projects can be planned and each person has people they can involve in the program. This will probably be regular ongoing challenge since there are always so many programs to attend.

Locations

In order for a business to get business one should attend networking gatherings. There are many to choose from, and I have attended most of the local ones. Some cost $600+ just to meet people who need your business but don't have time to give you theirs because they are busy finding customers for their own. I attended a few initial meetings and the people couldn't have been nicer. Once I stopped going, these people disappeared. I know cause I emailed them and got no responses. Then there are meetings that have a networking component to them built into the meetings. There are some weekly meetings that I attended before I restarted Infobility and thus continue volunteering on the committee. I did a few programs at the local library but generally that is not a good location unless you have a number of different agency representatives speaking, then they'll bring their consumer groups to listen. A venue such as a restaurant is generally not good because people do not like to venture away from their home areas. My next program will be in the building where the speakers work.

Infobility update

My program is steadily gaining traction, I have a few presentations and activities planned. Thursday is a big one with the managers of the Amish Suites, Millers Smorgasbord, and Plain & Fancy Restaurant. I am actually looking forward to it because it's a topic I know well, it's not commonly discussed, and I'm passionate about it. Hopefully this 1 program will lead to other big ones, like with HR departments, diversity programs, and employers. I also have a few other things planned including wheelchair basketball games and events with other agencies in October. The recognition program for employers should be like the Next Steps one years ago. The one with the special needs lawyer will be interesting; she'll take the lead and find me a new audience of parents with mainly housing issues. I continue to give her contacts so I'm doing my part. The website is still a disaster but I'll eventually get a competent person with a disability too work on it. I may also make a facebook video- that was easy to do the first time around.

Advocacy

I resumed my "fight" with Invacare after I proved that neither the evaluator nor the provider were at fault for the height of my seat. I suspected this from the beginning but I decided to do the leg work and acquire a hard copy of the evaluation. Then I wrote to the guys from Invacare who I met at the Abilities Expo in May. They asked for the reason for "my quality control comment and also why would it effect you?" I couldn't even dignify those questions with an answer. Are they that dumb or are they that far removed from the implications of their products? I live in for 14 hours a day OF COURSE it upsets me. Furthermore, I have serious problems with this chair due to their negligence! I reread the article about the FDA citations yet again then I wrote a letter and emailed copies to the experts mentioned in the article AND I tracked down the Radiology and Health Division of the FDA (they sanctioned the company and then added to them since Invacare did nothing to take care of the issue the first time. I now have contacts with some good people and I'll soon get consumers involved. This will be interesting an interesting journey- At the very least, Invacare will be forced to deal with a few consequences from their customers.

Wheeling with new wheels

My Infobility baby begins this week. I now have 2 mentors and I will soon receive my film. I hope to get a reply to my post, I know someone will. I'm developing a business plan and from now on will create list of people I can show it to and then discuss employment matters. TED X helped me formulate my thoughts for the presentation so I will offer a simple yet comprehensive message wherever I go. Just like my presentations from the Interact Grant, it will grow steadily. I'll volunteer for AmeriCops, United Disability Services plus Adult Jewish Growth + Tikkun Olam with my temple so I'll be living my philosophy "helping others helps oneself." Cub Scouts is not going to happen much longer. As I said to Chief Garipoli "it's now or never."

Wheeling with new wheels

I reached out to a local chamber of commerce and I received a response. I was asked to send some information and I did. All I need is a few interested businesses than I can grow. I will order the video so I can be more motivated to succeed. I wrote to a lady in Illinois who has a program for individuals. She wants others to help her expand and I said I was interested. I then found a really respectable and busy charity to work/volunteer with doing outreach- right up my alley. Hopefully I can grow that way. I need to do this differently then others do it cause I am so unique. I won't give up, maybe I'll put out a notice online.

Wheeling with new wheels

I need a service man for my Comcast computer. I shouldn't since it's just cause the only issue is I can't reach wires to return a box for my television. That's not right so I'm going to look into this. It's worth trying. I am frustrated to need help for this little thing. Maybe my apartment maintenance would help. I have argued with the company enough.

Wheeling with new wheels

I'm trying something new. Rather than have cable which gives me 100's of programs I'm not interested in watching I will get U tube and perhaps even Netflix. I will be very happy to get the CMT channel since "Nashville" has now been transferred from ABC. I'm going to try new things and actually spend money on Infobility so it will be successful. It is time to cancel Boy Scouts because it is not something I am going to just hang on to forever, even though I have a terrible vocational history. I got a nail in my tire and it's very possible it was from driving in this terrible section of town. I will run a wheelchair basketball game but that will be my last hurrah. There has got to be a way to attach this lengthy blog to my wordpress.

Wheeling with new wheels

I attended my first business leadership group. It's not the first ever but it's the first at that location and it's the first time I attended for myself not IM ABLE nor The Blue Crew. Everyone was nice and I did my 20 elevator speech. It sounded okay but I need to improve it. So this week I attended a SCORE counseling session and an ASSETS business start-up class. Next week is the program at Millersville on transitioning, the Kick Ass Women's group, the business leadership group again and I will have a vendor table at a church. I'm ready for Infobility to be real in some manner. Also Melissa may be helping me, actually we would be helping each other. I've made a slide presentation for Vocational Venues, copied flyers on the 2 main programs, and will be designing, printing, and showing a vocational skills program. I may do another "Next Steps" program for this summer. Goodwill is on board, I want to make a forum for October and try to produce a video. That's a good start.

Wheeling with new wheels

New issue with apartment... they approved a curb cut but they will pay 1/2 of the $3556.00 (their estimate). Now that I'm looking, they have cub cuts all over the place, 2 by the sign, 2 by an island for flowers, and 1 by each of the mailboxes (people in chairs get mail delivery to boxes next to their doors cause the areas are too high. Parents are mad and so I said forget it just get a $200 ramp that's temporary and can be moved when I move. This is such a stupid hassle but it's because my first idea wasn't pleasing enough to look at; that's always priority in my new world. Infobility is coming together and tomorrow is my first big biz meeting.

Wheeling with new wheels

The tv segments on my disability awareness program went well; and I'm pretty sure it's already helping one of the speakers already. He had a lot of pent up anger about discriminatory treatment and he seems to be comfortable talking about it with me- sharing it was his own decision. I feel much more confident about my goal and I am connected with a really big vocational rehab agency- Goodwill. My next project is to plan a forum on employment and disability. I've done these things before but this will include some Pa state legislators or their aids. Inclusion will become an idea worth spreading. I'm glad I did not give up even though my parents and others strongly suggested that I should. I only wish this opportunity had come two decades ago. They say that there's a time for everything- it wasn't mine.

Wheeling with new wheels

Persistence pays off, I now have two places that will take care of my chair and I reached the executive office of Days Inn so I should get a free stay. Persistence pays off. I think that comes largely from having a disability- nothing is easy at first but eventually things will get easier. I get that every single time I relocate to an apartment. This time I had to deal with a new disc size in my van and a higher wheelchair which affected everything. Sometimes frustration results in just giving up but what I going to do? Stop my transfer half way to the tub cause it's hard and scary and just remain dirty? Doing my Infobility business plan is really telling me to stop thinking about doing it and JUST DO IT. There's really no competition and I will meet a lot of people. I decided to go Friday to the conference in Philly (that trip is getting easier) and I plan to grow it this summer.

Wheeling with new wheels

I am convinced that customer representatives are subjective. I called my insurance about getting a different company to repair my wheelchair. A customer is supposed to go where they got the chair for repairs... unless the company dropped the manufacturer. I finally found a place but the rep insisted that my doctor get an authorization WHAT? I've used tat doctor for years with no problem. Now the script I got will be outdated by the time this is done and my doctor does not have time to go through this baloney. The lady is just power hungry. .... I was booked to stay at the Days Inn and got a confirmation number for the room. I got there and they had nothing for me in their books. The person who booked the room was from a call center and gave me a confirmation number that is not used by the actual desk clerk AND they spelled my name wrong. How is THAT my fault?

Wheeling with new wheels

Last night I attended the Luke Bryan concert-in the rain. I love country music and I wish I could see everyone in person. It is a challenge to manage among thousands of people and I like to prove to myself that it can be done from a wheelchair. However, unless you're with a group of friends, the experience is almost as non - disabled as you can get. It's expensive so that limits most people. I remain off to the side on the track level or in the segregated disabled section. The place is filled with thousands of really rowdy people who stand in front of you and are usually drunk. When getting out of the parking lot, if you drive, you usually have to idle for a very long time because there are many vehicles and only one or two exit routes. It is exhilarating and there is nothing like being part of a live performance. As long as a person is not afraid of crowds, I recommend it once.

Wheeling with new wheels

I was approached by a local tv station manager and asked if I wanted to 2 segments on her local show on "disability and employment." I planned on having employers who hired disabled to speak about their experiences and what to say to other employers encouraging them to hire. No one would anyone to come. "Plan B" would be to get people in different establishments to talk of experiences with disabled customers and members. I got a pastor, a restaurant manager, and a vocational rehabilitation counselor. The lady called me a bit confused and asked me for photos. I did not have any but I sent her my slide show, an outline of my other projects, and the booklet on managing daily life when hurt later in life. She just wrote me back that she was impressed; I now have a wonderful, well connected community member supporting my venture. Infobility WILL be realized!

Wheeling with new wheels

I'm going to get an article, in a company publication, written from the consumers perspective. They need to be forced to learn about the consequences of living and using substandard products. These agencies, companies, and manufacturers for disability products and services are insulated and although they may claim to care with smiles and nice words, they don't show it. They need to "walk the walk" for consumers because we can't- that's why we use their products. They can't just make additions to their structure and not explain it. I have 2 triangular metal pieces in the rear of the seat. It really limits my transfers but I'm told the pieces are not removable because they are crucial to holding up the chair. WHAT? They weren't there in the last Invacare chair. There's a way to get my views heard and I will find it.

Wheeling with new wheeels

I sent a letter to Invacare explaining the problems (extra height and 2 pieces of metal) and consequences (falling out and urinating on the stall floor). When I saw that Invacare was already sited once for poor quality control, I knew they were to blame. It is not my surgical supply store who will no longer work with them. It turns out that my cousin knows the owner of Invacare and also a much better company for wheelchairs. It is clearly too late now but I want the reason for the problems and I want them fixed. Unfortun- ately they could care less cause they don't rely on the products they manufacture and unhappy consumers do not advocate. I WILL get results and I will be the best customer of Infobility. I'm "making my mess my message" (Robin Roberts wrote that in her book).

Wheeling with new wheels

I may be able to make a few bucks helping to locate venues for two representatives from United Health Care. They are a really good joint Venture since they seek people and agencies with disabilities. This will validate my belief that going to meetings is a good way to meet good people. I am really, really ready to give up the Cub Scouts but I want to have a transition and have another big gap in my vocational history. Also I already have a gig at a local restaurant for the one girl. Maybe this is the way to go.

Wheeling with new wheels

Actually I'm taking that literally. I desperately need tires I am on the rims and so I'll end up needing new wheels too. I discovered that not only does my old surgical supply store no longer take my insurance, they no longer deal with Invacare! In order for any company to do repairs they insist that you go to where the chair was bought so I'm between a rock and 2 hard places. Then I called my insurance company and complained, I called four places on their list of accepted companies (I found one in Lebanon), now I must call Invacare since they may not accept me going somewhere else. I think they will see that I have absolutely NO choice. Should I drive there? They are manufacturers, they won't do it. It's not like I insist on getting a particular item of clothing.

Wheeling with new wheels

Yesterday I began with a call to reject my offer to participate in my tv segment on disability & employment. I altered the entire program to be just about disability awareness in general and decided to include a restaurant owner, who was very grateful, and my apartment maintenance department who made some unique accommodations for me. Today I began the day with a well known vocational rehabilitation director accepting my offer to participate. I quickly wrote her details and will not have to include my apartment maintenance man but it would be a nice rounded bunch. I still want to plan a disability employment segment at a later date. Tat would really make Goodwill shine, I hope it doesn't overshadow me and I get no benefit from this. I can't think negatively already though. Also I may be able to purchase a cushion down the road at Bed Bath and Beyond.

Wheeling with new wheels

My latest expo will probably connect me with a mental illness in the next town over. They have a grant to get the perspectives of people with physical disabilities. What a good way to connect with others and share my knowledge! They said there are a few members who have secondary challenges that are physical. I am still trying to get approvals from employers and vocational agencies. It is looking more and more like I will have to approach consumers only. Tomorrow is an event with the local center for independent living so that may be my only option. The date is coming up very soon.

Wheeling with new wheels

My new "home" feels like home. I will have some challenges like getting on and off the shower bench and parking backwards since there's no curb cut near my door, but basically I'm not letting those things impact my new life. The good far outweighs anything else. I made some good connections at the event yesterday so I think I'll start as a simple awareness program and maybe later focus on the vocational aspect, by then I will be established; it will still be considered a unique venture. I may even work in York with NAMI. They have a grant which requires a physical disability perspective- I definitely have that. This week I'll plan my 2 segments on TV, I met a man from Lititz Recreation who works with disabled people regularly. The key is to be busy enough and positive enough to not let my parents pessimism and past problems impact the present and future.

Wheeling with new wheels

I am a huge proponent of living independently in the community; however the person must be A) realistic and B) have a support system. I have a friend who is very impaired physically and 66 years old. She never went places and never had real friends; she just never got a chance to prove herself in society. I have only known her for 1 1/2 years so I don't really know how hard she'd tried. I know she's allowed a homeless man live with her as her "attendant" for years. Each time he finds a girlfriend he moves out and she's left to fend for herself. Lately the apartment management evicted him and told her she'd be also if he doesn't leave. She's had bedbugs for at least a year but never told anyone till now. I feel badly but she is not able to manage any of this herself and surely can't afford a new bed. Office of Aging helps sometimes by sending her people to help but they do not let her know at all. Sometimes they come just to claim their hours and leave. She may realize or be forced to realize that she can't live like this forever. I'm moving out in 4 days and I will be staying away this week as much as possible.

WHeeling with new wheels

I have a chance to plan a mini forum, on disability and employment, for a local tv station. I waited for my first choice than called after 2 days. I am glad since she immediately said no. I then informed 2 other places and am getting no where yet time is ticking. Maybe this challenge to find a rehab agency is good since I don't really want to represent agencies. I mostly care about employers. I think I should offer a broader view though- job coach and employment specialist where they can address consumer issues. I really need this confirmed soon or it won't work. I have seen people at Home Depot, Burger King, and Auntie Anne's so I know it's going to have results. I guess I can call the Disability Empowerment Center.

Wheeling with new wheels

I returned from Philadelphia where I spoke to a man who runs the group for businesses on disability- employment issues. I was quickly overwhelmed then skeptical if I had the professional background to run such a program, I've been out of the field for years. However, I discovered two important things: First, I don't have to be an expert on the financial advantages, no one really asks that anyway. Second, I do have to be knowledgeable of both sides. It will be expected at that I know some information on the impact of work on the government programs consumers have. I must learn more; I can't do just 1/2 the equation.

Wheeling with new wheels

I attended a program on fundraising. These dedicated non-profit staff from around the area did not sit or talk with me. Yes, I was busy when I came to the table but since it was a long one, there was no need to interact- so no one did! I was not happy about that factor. Then this expert spoke about organizing and balancing one's life and being as efficient and effective as possible. He then made a concerted effort to let people know the importance of getting to know your donors and appreciate their contributions. Does that information really require special knowledge from a college degree? I was so disappointed and astounded. Perhaps I may benefit one day from reading his blog; surely the presentation did not offer anything of importance.

Wheeling with new wheels

If one's boss is condescending, how does one change that? I am not going to show a 20 minutes video on communicating with people with disabilities so what is another solution. Of course she will not admit it but I really know the signs and they are all there. Do I offer lunch? Do I confront her? One idea may be to show her what can do. Another idea may be to ask her for her opinion. I will certainly ask her if she would give me a task to do for the next program. I'm determined to break this obvious cycle since it will just worsen if neglected.

Wheeling with new wheels

Vocational Venues will be simple and money made will be for charities- Aaron's Acres. I will show the 20 minutes video on communicating with people with disabilities and then focus on the film "Vocational Venues." Covering each of these: 4 financial incentive, 2 marketing incentives, 7 reasonable accommodations, 2 undue hardships + comments. I'll encourage people to make appointments with me to discuss particulars and people to join the monthly group. It will encompass local churches and businesses. Eventually a big name business will sponsor the project and I will be able to offer job openings to Goodwill, EARS, L.E.S.S. The Lighthouse and maybe privately too.

Wheeling with new wheels

I am registering for a major conference in Philadelphia June 10. Originally I was only going for 1 day but I may stay for the entire thing. It will offer a significant amount of information on talking with employers about hiring the disabled employee. It will be on a much larger scale, however, I will take some of the information home to Lancaster and apply it. The most importan thing is to meet a few people wiling to get involved with my efforts so I can get this program off the ground. I will start small and grow it into a medium sized project. It's time has come and I need noth continue to think about it rather just do it. I'll neer know untill I try.

Wheeling with new wheels

A friend suggested that I put a film, of me managing throughout my day, on facebook. At first I did not like the idea- I'm not photogenic. However, I gave it some thought and realized that getting my points across while being in the environment 1)a heavy bathroom door with a low toilet; 2) a salad bar with no ability to reach the other row of food choices may be much more powerful. My first disability presentations were done by film students at NCACC; I showed it so often that I wore it out. This may be a good way to get the attention of the business people and others in the community. I developed an outline and now I will contact the local community college. At the Ability Expo in NJ I will ask people with disabilities what issues should be addressed.

Wheeling with new wheels

This Infobility website is getting frustrating. I don't think it even needs to be online. I want this to help Lancaster first and foremost. Furthermore I have an acquaintance who wants me to give her my opinion of important tips for people in wheelchairs. She says she wants to have a sensitivity program for medical professionals, I am for collaboration but she said she knew nothing about that aspect. I wondered how she can share what she does not know and hasn't made any contacts with medical people. Meanwhile I am going to the expo but I'll just direct people to my wordpress blog and tell them that an employment focus is in the works.

Wheeling with new wheels

People do not understand, they think they're helping but they aren't. They are actually making things harder. My temple had "Mitzvah Day" in which you do good deeds for those who are less fortunate. Twice the director or the program insited that I take a box before I leave. Well I tried sneaking out but the other director insisted I nnot leave without the box. When he met me at my van he had a HUGE box filled with Passover food. I would not let him put it on my back seat, it would fall and I'd be trapped in my van. He tried fitting it in my way back and opened my door. He tried unsuccessfully and pulled it out. Then he emptied my front seat and pushed it in. I started to back out of my parking space and my manual wheelchair fell to the ground. The man did not close my back door. I was driving around with the box but then I needed my front seat. My friend jammed it in my way back and slammed the door. Not meaning to seem ungrateful but...

Wheeling with new wheels

Right now Cub Scouts Program Assistant is my paid job. It was an experiment to get involved in other fields. I did not feel useful at some of the meetings cause the kids ran around a lot and they did not listen to me. I asked if I could help them find other locations for meetings and the administrators said no. I was contemplating leaving but now I think it would be good for me to show up at the campsite and attend meetings in which the kids play soccer. Recently I got approval to design a cub scout program this summer that would result in the kids earning a badge. I am glad I did not give up. Many people said I should just quit but I refused to give up and now I will not be jobless.

Wheeling with new wheels

I just received a message from someone I met at a meeting of entrepreneurs. He's contacted someone from a local college on my behalf and will keep me posted. Not all people are out for themselves, just many who I meet. OVR, the agency that I complain about, has spent about $500,000 equiping my vans and my specialized driver lessons. If I really wanted to I could get a job there but I'd have to become much more complacent since if the government is paying my salary then I can not advocate against them. I need to be careful what I say to others because if I sound angry, professionals will not be interested in my ideas regardless of how worthwhile they are. It is a really delicate balancing act.

Wheeling with new wheels

I just attended a program in which churches are really good resource for employment of people with disabilities. It's not about faith but the congregants who are employers. A disability awareness program is done and then discussion focuses on jobs. Many churches have offered to work with and find employment a few people with challenges. I never considered this avenue but it seems to be a rather easy and successful resources. This is an environment in which people, who happen to be employers, are not on deadlines and are generally more receptive. Financial incentives are rarely discussed rather the concept of altruism is central. Vocational Venues, Lancaster is looking up but not quite ready to roll yet.

Wheeling with new wheels

I am so tired of "helping" professionals at work and it not counting as work. If it was anyone else it would be a feather in their cap and it would be remembered once there was a job opening. Instead the other person takes the information I spend time finding and I get in trouble for it when I want to claim my work. Even if I do a favor for a friend's kids I get yelled at and the real reason is I make her look like a bad mom if I'm showing her kids videos she can't. I refuse to go for another real job cause I will just "work my wheels off" and be told "you don't need to do that." What happened to doing extras in order to get ahead? Moore than one person said I'm being taken advantage over and over because I'm disabled.

Wheeling with new wheels

I hate to quit my scout job but the locations are far from where I will live and I will be that much more motivated to concentrate and grow Vocational Venues. I'm getting involved with a refugee program run by a co-worker. I will meet business people who will let me conduct a program. Also the company that owns my apartment is huge and they'll listen too. Time to change my focus and achieve my goal for people with disabilities and for myself.

Wheeling with new wheels

It's been 1 month since I've written. I am moving because I can not deal with the construction downtown. Environment is important so I plan to be around people who like open spaces. I am also changing my focus to assisting employers who may consider hiring people with disabilities. I think more focus needs to be on them because regardless of how much money is allotted for hiring of consumers the employers is the one who does the hiring. That is not a popular angle but this will be my strategy. My new apartment place is run by a huge company so I plan to find someone in human resources to talk with about starting an employment symposium. It has worked well for 16 years in Philly.

Wheeling with new wheels

I may have found my 1 person with all the connections I need to make Infobility work. I met a lady at the Chili Cookoff on Lititz (not mine) who works for the Elks. She meets and helps people in their homes. She only works with kids but she keeps in touch with people and refers them if it's not her area of expertise. I can help with the vocational area and maybe organize a newsletter for her new supportive group for families who need to learn what is available once kids are no longer school- age. Sound familiar? That's what I tried to do but no parents wanted t hear that AND some became insulted when I suggested that they may need help.

Wheeling with new wheels

I hope I'm over-thinking this. I answered an ad of a man who was interested in starting a group to help and support people who want to start businesses. We corresponded and I offered ideas of my own including saving money, time dollars (bartering with each other for services) and disability. He even said he liked the last one. Then he asked for a photo; I should have known. I think he was primarily interested in me not my ideas. He mentioned his ideas briefly but never really described them. He also belongs to "TransAmerica" an MLM on insurance. I told him I wasn't going to promote that. I hate to assume the obvious but unless he replies soon I will chalk this experience up to nothing.

Wheeling with new wheels

Saturday was an exercise in futility...and looking at the flip side. Nobody came to the chili challenge; however I will channel my energy into something that needs to be done. I will no longer wait for the "right time" rather "just do it" is my new motto. 2am I created a brochure for employers who hire applicants and people in the community in general. They will hear the message "Make work, work for you" and I will meet those who were previously discriminating. This will get easier all I need to do is get over my self (my insecurities) and make it happen. People will come out of the woodwork for this and I will use every last Dixie cup and spoon.

Wheeling with new wheels

It's amazing how people without disabilities are so unreliable and everything is such a big deal. Thus far I've got only 3 people replying to make chili for tomorrow. No one RSVP'd to attend so I have no idea how much table space I'll need, food I'll need, plastic spoons and cups I'll need or room to display art work. This event went from a cookoff, to a challenge to just a party. I've already made meaningful connections for others too. Regardless, it should result in a few new contacts for Infobility- actually, it already has.

Wheeling with new wheels

I love helping to connect agency professionals; it seems that I am more open than others who go to meetings but don't bother to network. I now know 2 veteran programs that do the same thing! That's good but can also be competition. Agency staff are competitive cause it's the same pot of money they go after. We all talk about working together but the bottom line doesn't show that. It's a good bargaining chip since I can offer help to grow their program and get favors in return...like cooking chili. I resent helping and get nothing in return. That's just wrong reciprocity is the name of the game; I'm not being selfish.

Wheeling with new wheels

Still no RSVP's from anyone about the Chili Challenge! I've talked to radio and television stations, shared countless flyers with people, and event contacted a service groups at a local college. Today I'm going to observe an organization that has done successful ones before. Hopefully some of tem may be interested in visiting mine. I will either have too much food or not enough. Hopefully I'll have $60 in in gift certificates and I need to figure out how I'm going to shred a block of unopened cheddar cheese. I need plastic spoons and cups and should get sour cream. Maybe can get tortilla chips from the local beverage store.

Wheeling with new wheels

I hate to quit anything but I know my limitations and Cub Scouts is really not for me. On the flip side YWCA wants to include my disability program in their normal formats. I am getting what I want but it will still take more time. That's frustrating cause I've been waiting 30 years for something to happen- how much longer must I wait?

Wheeling with new wheels

New disability programs do work they just take forever to catch on. So many people refuse to admit that they need the kind of help I offer because they expect that the established agencies will come through for them. Suddenly I am hearing from someone at a program for families whose adult child graduated from school. They signed up for "the usual" and are just realizing that the usual is now unusual. Funding cuts result in consumer cuts so a consumer on the couch that people were horrified to hear about is the reality. I would love to resurrect this program; I would actually get an audience and not have to "beg, borrow, and steal" this time around. Perhaps this parent can spread the word for me.

Weeling with new wheels

Now that I am involved with meaningful community activities for high end people I am less interested in accepting the condescending treatment from professionals of agencies who don't care. It's amazing how inspirational it is to be among all motivated intelligent people who don't have preconceptions and low expectations. It is so nice for my ideas to be welcomed, respected, considered and eventually incorporated into the overall fabric of the project. I wish I had experienced that before instead people just felt threatened if they felt I knew more and had more motivation than them.

Wheeling with new wheels

When I moved downtown, someone told me that people with disabilities needs to be included in boards and planning meetings at the community level. Boy is that the case! There are so many things that should include awareness that don't! I get more and more surprised, frustrated, and eager every day. I'm like a broken record but every person I talk with is different so they never heard the speil. It is no wonder why people are ignorant and then arrogant! Well, the hotel in New Jersey will never again be that way. T hat's what the advocate at the local CIL promised.

Wheeling with new wheels

I got a ticket to attend an event at Point Pleasant new Jersey. It's not too far but I'd be more comfortable to stay overnight. It's always a nightmare to get an accessible room and I can't remember the number of times I've been told it was fine and there was a step to enter. Many times I can't use the bathroom but that's a minor issue I deal with. I'd rather just go and find something later but that is risking it. Tolls are very costly but the interstate is best. I am always determined to do these thing then afterwards they aren't that good. Hotels are so much trouble if you do not walk at all. However, it always works out in the end.

Wheeeling with new wheels

This morning the revivlal of Vocational Venues, my old disability & employment program came together. I have been taking bits and pieces of Infobility but I knew that employers (and kids) need to be my target- not consumers. All kinds of money is going into job placements but employers are largely overlooked. How can an applicant with a disability secure employment if employers won't consider them? Education seems to be on a case by case basis once a job developer finds someone at a community meeting or a consumer expresses interest. WHAT? I used a sales book with statistics, and pictures of successful placements.

Wheeling with new wheels

Well, the parking situation isn't that good, considering I need either an end or two spots. I just discovered that it will not get plowed again- only 1 place is good for me. Oh well, other places need the plow more than we do. Yesterday I spent 1/2 a day complimenting my company and complaining about another. It's their own fault. When an apartment management company keeps taking advantage of their residents and proves repeatedly they do not care, there will eventually be revolts by their residents. It's time and I can get another company to inquire. Gosh if they only new I was behind the call to the State Representative!

Wheeling with new wheels

Happy motoring has been taken to a new level. I got approval to wheel in the street since sidewalks and curb cuts are hidden by the snow. My management could not be more compitent! They didn't just plow, the cleaned the ramp, 2 driveways and 2 parking lots. Instead of complaining I am solving problems right and left. Other people in wheelchairs should spend as much time as much time solving their problems as they do complaining about them.

Wheeling with new wheels

What a difference a day makes! I went to my usual monthly LINK Meeting comprised of local agencies. One speaker covered homelessness (purpose of fundraiser) the other speaker was a home health care agency who seemed receptive to my projects. Years ago I was hoping to connect with one and share "Tenacity of Hope" among other things. I plan to meet with them and discuss what else I can offer. I was too optimistic, as usual but perhaps that isn't a bad thing. I also distributed flyers to Verizon, Lancaster Fire Dept. (they wahed my wheels too) and Members First. Then I found a library book called "The Chilli Queen."

Wheeling with new wheels

I'm getting opportunities to grow my programs. The YWCA wants a weekly disability program and the Chamber of Commerce is interested in the employment aspect. I'm no so sure I want this to become a BIG business so that entrepreneur class is not something I will commit to just yet. The Abilities expo is something I will really benefit from and if I can be part of the Y and Chamber that will broaden my scope. I'm also really interested in reaching kids who don't care. Possibly getting someone to talk who is older and troubled in his youth.

Wheeling with new wheels

The origional agency representative who I didn't think was a good match to help with the chilli challenge changed her mind and decided to help...for a week. I just got her email which said she's backing out. I knew it, my gut is usually a good judge. When I wrote her that "I was taking up too much of her time." was a nice way of cutting ties. She didn't get it so we met and she agreed to help. I called my Plan B, a veteran program, and he was more than happy to work with me right away. What a pleaseure to hear him talk about this project. The saddest part about this was that the first lady was from an agency that most people with physical disabilities use. He whole demeanor toward me was demeaning and I'm sure that some of it was due to my having a disability- that's how she treats them.

Wheeling with new wheels

My chili event now has name recognition so I hope more people will attend. When I did my program in May it was better attended because Extentia lent their name. Now United Disability Service is doing the same. It is ridiculous that I am not making a dime on it but since the company is big perhaps some people will come from the agency. I am not assuming they will, so I am hoping that a local college will make it a service project since proceeds go to a local service. The restaurant also has it's regulars so hopefully that will bring in some people also. I'm doing the best I can but media will not be alerted so it's all being done "by hand."

Wheeling with new wheels

I reconnected with my childhood friend. She used to walk and it seemed like she had a lot of opportunities in her future. She was from a really broken home with no advocates to "push" her. Decades later it's no different except she gained a ton of weight, uses a wheelchair, and has attendent care. I guess I made her feel badly but I tried to subtly bring it up. She still had excuse after excuse. It is very unlikely that she would sudenly get motivated now. I can't imagine how it didn't bother her but I have learned that you can not project yourself onto another. Just cause I feel a sense of need to succeed doe not mean someone else would or should. I have to accept that.

Wheeling with new wheels- working

My next area to address, employers, is starting to come together quite well. I wasn't sure how to deal with this extremely important issue but I know that the usual "hire the handicapped" isn't getting as much attention. Money was increased for placement but the number of placements did not rise. I believe that job development should start with establishing relationships with employers. Once you have an employer who is interested in the benefits of hiring a person with a disability, there are many, the person is more likely to contact the agency when a job becomes available. If I have a simple face to face meeting similar to an informational interview then discuss financial incentives for employers, I would have an interesting topic worth listening to but as an individual within no agency behind me. I would be as positive as possible not discuss negatives such as fines for lack of enforcement, costs of reasonable accommodations, etc. I want to hear business concerns and discuss the high percentages that disabled employees receive for vocational qualities such as safety, attendance, and performance.