Getting therapies on board

I chose Hershey for my operation and got them interested in TRR. I chose CPRS Therapy and will be getting them interested in TRR. I already got Drayer interested and next Wednesday I will be meeting with Nova Care for TRR. That makes the big therapy companies will eventually be partners and the best way is to become a patient. I needed the surgery anyway and I needed therapy anyway so it was a logical move. If I can't get companies to be partners nor rotaries, I can work with different entities first and branch out from there. Everyone knows someone and I can create events and invite them for kayaking experiences. I have learned more about my situation from therapy in 1 visit than I did thus far from all of the professionals. The key is to star small and build.

T.R.R = Tenacity. Risk. Results

TRR is Team River Runner but now it also stands for Tenacity. Risk. Results There's a grant for "Employer Focused Employment" and I feel compelled to create a program because it's my passion, funding cuts will decrease vocational agency help, the way it is designed now is not logical, it is my passion. I am not sure TRR will be interested in it as a grant but they do a bit on the vocational end so I can sell them on this as another vocational program. A good counselor is all about facilitating natural supports in the workplace so the professional can back away. Therefore, it makes more sense for support to come from within the company and the individual is empowered to do it independently rather than have an outside rehabilitation agency come into a workplace. I always believed employers should receive two things: 1)A basic under standing of disability. 2)A basic understanding of accommodations. I have the tenacity (I don't quit), I will take the risk (by creating a website for this program), and results will happen.

Deal only in solutions

It's fine to ponder a problem but don't perseverate - move on to the solution. If it's a wheelchair related problem, rather than calling your provider, consider "outside the box" solutions. I spent over a year advocating due to a wheelchair that did not fit my needs. I analyzed it and contacted the evaluator, the provider, the manufacturer and a company reporter. What happened was)lack of responsibility, 2)defensiveness, 3)being reprimanded for my questions. I learned of the serious consequences companies hide and people endure from faulty equipment. My story was that my seat was too high for my right leg so I couldn't safely lean over to get dressed, drive, or transfer on and off public toilets. I was instructed to call my provider and called 3 different places each had the same non-reaction. I finally decided to visit my local Home Depot. In the time it took to re-explain the situation 3 times, the solution was being developed....at no cost.

(Ad)vocacy doesn't add up

Most people who care about disability either experience it themselves or someone in their family does. Our constant advocacy of sharing testimonials, educational events, facts and data proving they are counter productive do not impact decision makers enough. We are the largest minority yet the lowest on the totem pole. Here are some repercussions of the tax law signed today. 1) Medicare will be cut by $25 billion, and slashed by $400 billion+ over 10 years. 2)Vocational Rehab, State Grants, and Social Services will be cut or eliminated. 3) Tax deductions will no longer exist for people who need costly treatments. 4) Attendant care will be impossible to receive unless the people live in institutions. Tax incentives for employers to make accommodations will cease to exist. So how can "Employment First" be implemented? How can we get jobs if we can't get to the job? I long believed that we need to work together and stop fighting over the size of the pie. It sounds like pie will no longer be on the menu.

Promoting another

I attended a meeting in which an agency was scheduled to speak about their services. Instead of using their allotted time they forfeited their valuable time in lieu of a wonderful but unfamiliar veterans program. It was so impressive that this happens, most speakers want to take sole advantage of an opportunity to address an audience of 60 professionals each of whom reach hundreds of consumers and families. For that reason alone I would promote them however, they are one of the few home health care agencies that are approved by the VA to assist veterans in their homes. The program that spoke instead is VA Assist and they help with funding services for veterans. It's always said that by helping another you are in turn helping yourself. This was a shining example that I will never forget and use as inspiration.

Just one

Drayer Physical Therapy is excited to work with our program. They have branches in Dauphin County and we will be doing meets there too. They have a national initiative so we will get involved with t hat too. They consider giving charities grants so that's my ultimate goal. One step at a time. We will still try pursuing other companies, but we must make the most of this first opportunity and do a good job. It will be easier to get company two and three once the first one is successful. Testimonials will be helpful I want to make this experience a good one for everyone involved. Ultimately CPRS and Nova Care should be onboard too but they will come later. I must appreciate what we have now.

FUNdraising

I am determined to make some money for the Team River Runner. I went pretty far to try to arrange something it was considered but not a great idea. There's one more restaurant to consider and then I'll look at partnering with a group at Millersville Univ. it would be students involved with our group. At the same time outreach to physical therapy facilities and hospitals are in the works. I must find the right who can help me make the connection, I thought that was the Rotary Clubs but that was wrong. PA Cares has ongoing initiatives and funding alerts. A new TRR goal will be to find a funding stream, create a funding stream, then bring in significant funding. More people than ever before are hearing about Team River Runner so that is the first step.

Driving and wheeling

My "new" wheelchair must fit in the lockdown mechanism in my van and my old one must fit also. I always went to my mechanic for the bolt to be drilled into my chair and I was mostly fine. Now the company that did it was taken over by a company that wants is concerned by liability and making money. They are not too willing to ensure that both chairs fir in the same lock. They offered to try by securing the bolt then trying it with the van. It doesn't meet with their approval they will just remove it for $200 or refuse to make adjustments. He guy says would I rather have an accident if it's done wrong? First, I wouldn't even consider any chair that is not exactly like the one I have now, so I can drive with both. Second he should give me some credit that I am aware of this issue. He assumes that since the chairs are from different manufacturers they would be different underneath. That isn't true. The evaluator was urging me to purchase a wheelchair that was nothing like the previous one. She wouldn't even look mat my van when I asked. If I said yes and it didn't work I'd be stuck; there could be no trial period. These are the experts?

New experience

It wasn't new for me however it was for the worker. I got my hair washed and cut. First I was asked if the person I came with was going to help me. I said no I brought him and he's getting a haircut too. I didn't feel it was an appropriate question to ask. Then the girl assumed washed meant using a water bottle to wet it. She stopped at her station waiting for me as I wheeled to the sinks. I explained that it's been done before but the shape of the sink made it hard. At one point I considered getting my bangs cut. I gave her encouragement all along and eventually she was smiling. It was an education for her and she said she never before had someone who used a wheelchair. I am glad it was a good experience for him but sometimes I get tired of be a teacher and also getting odd questions.

Attend everything

Well, attend everything within reason. If It's located in the middle or western part of the state I'd think twice. However, in most cases I get something out of everything. Sometimes an event doesn't sound worthwhile but I'm usually grateful that I did. Last week I attended a panel discussion on health care and related services in Lancaster County. It was really close to my home and it was sponsored by the United Way. Months ago I spoke with the director about a disability presentation but nothing has happened; even when I tried to follow - up. anyway, I was not even in the room at I was met by the director of the United Way who apologized for the disconnect and assured me her new assistant would get back to me. Sure enough I have a meeting tomorrow regarding a presentation. I also spoke with Alice Yoder, Director of the Wellness program through Lancaster General, I heard from her assistant too. The program was largely about outreach to consumers. I had told Alice I had a number of location ideas. She was interested in my input as well as Team River Runner, I do outreach for them too.

Go with your gut

I always tell people that regardless of how many degrees people have you know you the best. I went for a wheelchair evaluation. I've always been unhappy with my wheelchairs. Providers often strongly encourage a person to purchase a wheelchair that is at their location even if it does not gel with specifications. This time the evaluator wanted me to have a chair that reclined, leg rests lifted, and raised up high. I would barely get through most doorways it would be so big. She then brought out a chair with small foot plates, a totally different structure than what I've had, a reclining option, and legs that extended. She said I needed to adapt to the recent wheelchair changes. WHAT? I've adapted to everything in life on a daily basis. My needs include getting through doorways, inside bathroom stalls, and in the e-z lock for driving. I was very uneasy and my gut told me this wasn't the right one. I went home, got on the computer, and in 2 minutes found the perfect chair. Now why didn't she tell me that I should check out others that aren't at her location? Does she get anything for selling the one she chose for me?

Finding the balance

I attended a conference presented by the Lebanon VA but located in Lititz. It was open to veterans in the community; however, none were there. It was hopeful to hear the experiences staff have going above and beyond in the areas of outreach and care. I am also aware of the constraints that exist for veterans i.e. transportation, time of day, etc. But, most likely the majority of people made aware of the event were professionals. I was happy to hear of the improvements that have been implemented to reach local veterans such as community programs offering evening hours and trips to interesting locations. Unfortunately the less than positive attitude some veterans in the community have due to their experiences with the VA System leave them angry and aggressive rather than assertive. There has to be a better way to strike a balance to ensure that the people being served are represented in addition to professionals. These events are often where changes start.

The VA Summit

Friday is a program on mental health and suicide prevention. I expect to learn more information and meet people who would benefit from these programs. I hope there are veterans attending because there are many other issues that need to be addressed but may not be. One important issue continuation of services regardless of where a veteran is living. The VA seems to be ready to cancel ones services if they move into a place that do not fit their exact guidelines. First I am interested in seeing on paper what the exact guidelines are to receiving services. Then there should be exceptions if the situation is not their own fault. In this case, the place where a veteran I know was placed was unaffordable after the first year. Consequently there was no choice but to move or be evicted after exhausting community resources for rent. The source of the problem was not discussed among the VA staff. I would love to advocate for that person. An investigation can be done anyway- retroactively. I'm sure this is not an isolated incident.

"Thank you for your Service"

I was looking forward to this movie but I was also apprehensive. Either I thought it would be bombs and guns going off or it would be continued illustrations of people's legitimate frustrations / anger about the system. Instead, the audience followed the lives of four guys upon their discharges. It was really insightful, informative and interesting. At the conclusion I spoke to a veteran and he thought the show was well done. I hope this brings some awareness to society. The title was perfect because so many people think showing appreciation is saying the five words. Unless they are a family member or a close friend to a veteran consequences are rarely understood. I especially enjoyed the part where one man, who was having serious flashbacks, said he'd rather have a physical injury so people would better understand him. Seeing is still believing and the invisible disability PTSD can be more disabling than an amputation. Society must continue to bring awareness to the forefront particularly in the vocational realm.

Paths to paddle

Team River Runner is a program in which participants, largely veterans, paddle kayaks to improve their social, psychological and physical situations. Promoting it is resulting in meeting physical therapy directors, social workers, and veterans. This will result in my spreading the word on disability as well. I can finally share the booklet and other information created to help those who need it. In time my goal is to get these people interested in fundraisers and partnerships at the national level. Maybe they would support my disability awareness presentations. I can't wait to continues this each day. Life just became really exciting and it was due to not giving up just quietly paddling down a different path.

Lancaster helping Lancaster

Every year we have what is called "The Extraordinary Give." This is a huge computerized telethon in which people contribute to our many non-profits. Yesterday I volunteered for the event and was really amazed how nice people could be. I saw hundreds of good people who cared and that is not something we see everyday. It is a staple to my county and it works- they made over $8 million, however I am not comfortable asking for money- reciprocity is my style so now I am organizing a variety of educational programs to offer knowledge about disabled veterans, and the kayaks program. I figure most people know someone who was in the military so I think this topics will be worthwhile. Since a picture is worth a thousand words the film of the kayak paddling will be of interest. In this way we are giving before we are getting.

Receiving support

Life works backwards. Security rules to protect cellphone owners even when the person is a proven criminal. Medical rules even when the patient is severely mentally disabled. Airport rules even when people detained are clearly harmless. Legal rules even when people have been exonerated from crimes. Fighting air gets so tiring but there are always worse scenarios. Why don't we have exceptions? Attitudes may seem negative but there is often very good reason for the negativity. So many of us just decide based on what we see rather than any real factors which the person must endure. People receive support who may or may not seem deserving but then once the person is released from the situation, often they must start from scratch. Life works backwards.

Capturing attention

Many non-profits in Lancaster are emailing businesses people and individuals to remind them to make contributions during the day called "The BIG Give." I help a veterans program so I wrote a startling statistic, a few words of explanation about the program, added part of a quote and sent it out to a dozen companies who attended the Veterans Expo. I assumed they would reply considering where I met these people. Instead I received "I am out of the office right now" from most of the emails. I then made some changes since testimonials/stories are powerful. So then I sent a member's story with a photo of people paddling in kayaks in the water. Since that is the purpose of the program, I felt good about the slew of emails I sent. I still received a lot of the same type of responses. I hope a few emails were read and will result in financial contributions. I will keep trying more effective ways.

Moving with Wheels

Apartment hunting is usually stressful for those of us who need bathrooms and their doors to be wide, shower spickets to be in the correct direction in order to transfer on a bench, and entrances without steps. Accessibility means different things to different apartment managers. Then there is the matter of discrimination such as curb cuts for $1500+ to be paid by the resident, anonymous complaints from other residents, and office workers who create extra charges (most of which are subjective). Discrimination is so difficult when the complex is part of a high end company. I had been living in a place I had to park sideways with my ramp open if I wanted to get in. I planned to move to a larger more accessible place within the complex and they forced me to pay a fine for breaking my lease. Then they delayed the move with two different reasons but never ever informed us. Then they wouldn't give us the key on the day they promised. The place we just moved to was unplanned, it was perfect but the lady in charge had no plans to inform us since it wasn't initially available. Now they lady in charge is going to inspect my old place before they return any of my deposit. She also said we may have to pay more than the deposit AND they will not give me any idea till after the move.

New faces, new places

I attend a monthly program in which case studies are presented then discussed in terms of what information is excluded? I am glad that the medical field is considering non-traditional solutions. Many people would be healthier if their mindsets were positive. It's natural that mental and physical health go hand in hand. Much more emphasis needs to be on support services and less on meds. These groups were always small and new people were always welcomed. Recently the leader was switched and two members were provider from the lower economic areas in the city. After speaking to the leader and two providers I saw an opening to a new audience who could benefit from my information. Even my calendar for saving money has a new outlet. I still have 3 beliefs: sharing information is a good thing; everyone knows someone else and has stories to tell; and all people with disabilities count.

veterans

Last week was a ceremony for those who committed crimes and were sent to veterans court. This is a lengthy program to offer mental health services and education to retired military personnel. It can be even more of a challenge than merely a physical disability. That is because post traumatic stress disorder never really goes away and if it improves it returns at night or any given time in the daylight hours. This program offers valuable support from professionals and gives people a real "leg up" to secure employment and a quality life. It is interesting that people who do not break the law do not receive this extensive support. I would like to get involved in this program, perhaps this population will be more receptive to my educational projects. I do not leave stones unturned.

The expo experience

I've gone to these events for at least 4 years in a row. I received $500 from a company once that was when I did outreach for a disabled sports nonprofit. The year after was nothing and last year resulted in a local television show spot. This year remains to be seen. I had a better strategy- I shared information on different disability issues and am following up with a specific outline for my meetings. This call to action will either result in bookings or not. If not I am deciding that there is no interest in this topic. I did speak to a local supported employment program about educating workers about disabled workers. They seemed to like that idea. I hope to hear from a local entrepreneur winner who will be planning an inclusive café- something I've always wanted to be involved with and just may get the chance. While I don't like to give up, I think that these events are best for established businesses not entrepreneurs- I'll see.

portalete problems

Bathroom issues have been pretty common in my life. I dreaded getting help for such personal needs. My public outings were less frequent than they are now for that very reason. I designed a toilet seat inside my manual wheelchair using a cool whip dish. I went a few places I wouldn't have. After the Americans with Disabilities Act my quality of life, and others in wheelchairs, grew. Mandating Title 3, Public Accommodations assures me that most bathroom stalls would be larger. I've even used a few portaletes at outside events. That was until yesterday at a country music festival. There were more than a few larger ones. Once I wheeled close I saw that they were not close to the ground. Oh well, I figured I can still manage. I opened the door and was horrified that there was absolutely no space for a wheelchair to get inside! It took 15 minutes to get approval to visit a toilet inside a building on the grounds. The police, security guards, and staff were completely perplexed why I could not use what they had. I wanted to show them but no one was interested in observing my explanation. My concern was others in my situation. Sure enough the mother of the guy in my row said they would go home early (30 minutes away) if her son became desperate. WHAT? I find it appalling that the company who manufacture these useless things make tons of money and have no concern that they can not be used. I plan to give Red Rose Solutions a lesson in accessibility because they do not offer me a solution, just one heck of a problem.

It can happen to anyone

After one night 100's of people will suddenly have the challenge of living their lives with a challenge. A disability really can happen to anyone at any time. I WILL find the way to reach the people who were injured at the country concert in Las Vegas. How? I will first call the Independent living Centers and I will then locate the names of the hospitals. These people will have a long journey and I know if this country music lover in a wheelchair who attends concerts makes herself available people will call. It will just take a little research, a little resourcefulness, and a little reaching out to locate these fellow "countrymen." In time many of them will have to take plane rides home. That could be a real awakening for those whose injuries are quite severe. My type of help will be completely surprising- I'm not a doctor just a rehabilitation counselor with a life-long disability. I will probably be met with resistance but there will probably be a few receptive people. "I will help people overcome."

An unsuspected suspect

The man who killed at least 59 concert goers and wounded 500 was said to be normal. While we cannot be suspicious of everyone it is hard to believe that this man was considered normal. A gunman isn't normal, my original thought was that he was a disgruntled veteran. He was very good at striking targets from long distances. He also converted a semi-automatic into a machine gun and owned an arsenal of guns. To me the hint was that he had no connections with a religious community, a social group, a recreational group, and was not tied to anyone, maybe an ex-wife. People do not really notice things because they are wrapped up in their own busy lives. I wonder why people didn't realize that he was a real loner. There must be more not everyone just does this at random.

Rotary Clubs

I have done very little for the veterans program lately but there are always new connections to make. The director of the program is very interested in the paddling activity but less in the business end. He suggested the Rotary Clubs a while ago so I sent a short not to 13 leaders. Responses have already come from big businesses leaders who are very well connected. Originally I wanted to help another group and hopefully help myself in the long run. It is likely to be more than a phrase, I have a good feeling that it's going to help me spread disability awareness in the community. Small programs will lead to other small programs and then I'll do a website. Rotaries are goo groups.

Finding the balance

I've been having a little trouble sitting up but I figured it would just get easier the more I did it. In this case it was a technique issue. I suddenly realized that something I had been doing all along would be useful in this case. Sure enough I was right and getting up won't be a big problem. However, that's the reason I don't get as alarmed when my body doesn't work right. Sometimes I should have visited the doctor sooner and since I didn't my body became worse. It is hard to know how important a problem is because people with challenges often have a different level of priorities. The same goes for my wheelchair and my vehicle- I wonder if this is a universal issue. I have been ignoring the wheelchair lock in my van go and overlook the problem. It only stuck once in a while but now it only works correctly once in awhile. It is hard to find the balance.

Bees with honey

I was certain that the real story surrounding my apartment move was fishy. I asked them to remove the rug in my new place and then replace it with vinyl. Naturally I was also concerned about the cost of removing my old rug at my old place. Furthermore, since I am moving within the apartment complex I am not breaking my lease, as I was instructed. Rather then an adversarial relationship I went to the office. The lady in charge of my move was willing to sit down and give me her time to answer all of my questions. She assured me that the rug issue was not a problem and more. I am so accustomed to experiencing unethical behavior that I assume that this is just one more unfortunate example. This incident turned out to be positive and the message can apply to other issues. You get more bees with honey than with vinegar.

Sharing information

The tag line for Infobility is "sharing information on disability issues." I'm testing the "sharing" part. I'm sending my second wordpress to all of the members of the Spinal Cord Peer Support groups across the country as well as Independent Living Centers in the USA. I will send them the "Do It Yourself Disability" booklet along with my site. For t he CIL's I'll make calls I should get some suggestions and replies. It will be a lot of work but who knows what will happen. I am also going to try getting some college students involved in disability awareness. This Jewish New Year I will find new paths to reach the same goal- inclusion.

Long distance trips

My biggest tip regarding traveling in a wheelchair is this- arrange it yourself do not leave it up to a travel agent. 1)If you need to stay overnight speak with guest services NOT a call center. I will never allow Expedia, Priceline, or others to book my hotel stays. In the case of my visit to Denver, Colorado there were many mistakes made that would not have been, had I arranged it every step of the way. 2) Never assume an airline van is accessible just because someone says it is. At a local airport I was to take an accessible bus to Newark airport. It came and the driver had no idea about the wheelchair lift request. The airport official then insisted on calling 25 places to drive me to Newark. I asked the lady to make alternate reservations for a Denver flight. She would not listen till it was too late. Once she was given approval the only available flight was at 9:40pm (there were 2 others we missed). At my suggestion we took a local/private bus with a lift that I had previously taken somewhere before. 3) Before the plane lands make sure your wheelchair meets you at the gate. After the trip home I was to meet another accessible bus at 8:15pm. This connection involved my speeding up the stewardesses. All four people stood at the airplane exit door wishing guests a a good trip. I asked about my chair and they said it may not arrive at the gate. Then I asked for further information and was informed that it may be in the baggage claim area. Finally, a stewardess did make a follow-up call on my behalf. 4)If someone requires a wheelchair for the long walk to the gate inside the airport, make certain the call is followed up. Often calls were made to request wheelchairs for my folks but attendants did not know who to help or they just passed by. One should not need a vacation after a vacation.

Disability for Lancaster

Rather than trying to create small events I may try arranging one big one. I met with the Director of Jewish Family Service who is interested in the agency becoming known for it's services. I pitched the idea of planning the Disability Resource Fair. The idea is to good to ignore but I can't see these disability agencies working together to create a county wide event anytime soon. After 2 meetings they're still getting opinions. I say move on already because families are desperate to learn of what exists in this county. I began writing an outline and my words just took over. What I developed is really comprehensive yet simple. 7 workshops include all facets of life- social/ recreational services, employment, housing, and estate planning. Hopefully a talk with the JFS and building organizer will result in The First Annual Disability Resource Fair.

An unexpected contact

I checked my linked in messages, I never do that. I noticed a lady who works at the independent living center in Reading. She asked me to connect her with Marsha Timmerman. Someone I wanted to hear from anyway. I then read that this lady was writing an article on employment and disability. I was very interested in helping and replied right away. We'll talk tomorrow and I'll tell her of my interest in disability awareness for employers. Hopefully she can offer me the exact support and advice that I have been seeking. I won't need to undergo a $295 10 week session from a mentor from the Samaritan Center. I'm meeting with t he director of the business program, I wasn't sure that was the right thing to do but I really need to explain the entire situation and show what I've been doing to market the mentoring program. There's all types of angels to explore.

Musikfest

Sometimes, if you're going to a festival, you have to create a Plan B. The Bethlehem event, used to have a van, from a local rehab facility, picking up people in wheelchairs at the same place as everyone else. Suddenly that stopped due to finances instead they have an accessible bus that drives people within the festival area. There's no time schedule but they tell the staff to tell those people who ask that there is. I would like them to be honest with guests in wheelchairs. It is probably a real hassle for out of towner's. Not only that, but during the week the bus only starts at 4 pm and that's not helpful at all. Once a family with a kid who had a disability wrote a letter to the editor about it. Last year I called and spoke to the director who was very receptive and said I could be really involved with the accessibility aspects this year. That was never followed up on but I will call again this year.

Her thoughts?

At the Science Factory I arrange for disability experiences for the kids but I spend most of my time volunteering. That job involves disconnecting Kne'x. Today I did this for hours at a time and it really resembled that of a sheltered workshop. Once the pieces are separated they must be organized into their own bins. A parent was watching me and on her cell phone the entire time. I couldn't help wondering what the lady was thinking. Perhaps nothing but I was really perpetuating the stereotype. However, I may get this into a newspaper article, it's quite a unique way to teach disability awareness. This is a great bunch of people and 1 or 2 will participate in a "Shopping on Wheels" at the mall. I have always wanted to do the experience and it will happen in the next 3 weeks. One girl in my chair today actually counted the number of people who stared at her while in a wheelchair- that's the whole idea of doing it in the community.

Placement strategies

I spoke at a staff meeting for Careerlink staff on strategies for increasing placement successes. Can the person perform the job is the most popular concern. Many jobs require multitasking and include physical requirements of stocking the shelves from items in the back room. I explained the benefits of using a salesbook- a small binder with information on the agency photos of consumers working in the community testimonials from other employers, and information on the benefits of hiring. I think inviting employers to charity events may lead to jobs also. The most meaningful idea is offering a general overview of hiring disabled employers even if they are not hiring. One never knows when an opening arises, if a good relationship starts who knows what can happen. These types of informational interviews should be explored.

Two issues two solutions

"It's a lot easier to blame people for their situation than figure out what to do next." Whether it's finding jobs for people with disabilities or growing a town in Kentucky where people need jobs, the concept is the same. The spirit has been lost after years of neglect and somehow it must revive so it can thrive. What...How... The first step is to take the first step. Not overthink it but create a tentative plan that will be flexible enough to change when needed yet stable enough to offer some structure when support is needed. What is there to work with already? In the case of people with disabilities, I live amidst the tourism area filled with establishments that are always seeking applicants. The problem is employers fear hiring people with disabilities will be problem. Appalachia is a ghost town with no establishments for miles and employers who fear hiring people who have backgrounds that are questionable and education is limited. I need to do some research with what has been tried and what hasn't worked then I can find a new angle. In the case of disability employment I will find out the primary concern of employers then approach them.

A disability vendor fair

A local foundation wants to create a public event that will draw attention to my population. It is in the planning stage and since I'm involved it will become an implemented event. I never thought I'd be glad that I so much time to get this moving. There are so many ways to make this work but since I'm not with an agency I will work on the other end- marketing. It will be meaningless if no one attends. I will work hard to get business people to learn about it and perhaps be involved. That will be my forever goal... to build the bridge between people from agencies and people from for profits. First I must make a meeting with someone from Networks for Training and The Sertoma Club. These people have turned businesses into donors; I will learn how. This is what I've wanted to do all along however, now I have specific opportunities for reaching that goal. I may also have a few aces to help me with my goal.

Disability plus ...

It seems that the best way to grow Infobility is to add a disability component to established programs. The Lancaster Community Foundation is willing, Be U Complete is willing, Jewish Family Service is willing, and now "Growing up Health" may be interested. A national interactive workshop for kids filled with staff from PNC Bank was at the Science Factory and I tried to learn who I can talk to about including something about "Growing up with a Disability." Who knows, it's worth a try and I figure if I keep trying different angles some will come through. I now have a video message called "Wheeling and Dealing" and soon I'll contact HACC to discover if a student will produce a video for me on another related topic. I was thinking of creating a shortened version of "The Ten Commandments." Show a photo and have my voice in the background explaining specific information. The sky can be the limit.

Squeaky wheel

"The squeaky wheel gets the grease." I was wheeling around and the noise got worse and worse. Rights and lefts became really hard to make so I eventually contacted my provider for repairs. The service man came and after evaluating the problem he said I need ball bearings, tires, and arm rests. I questioned the last suggestion and he explained that the one on the left is losing it's puffiness. WHAT? In Susan's hierarchy of needs a puffy armrest doesn't even make the list. Two weeks later I call to check on this order. Suddenly I'm informed, 40 days later, that I hadn't met my deductible and owe $1000+. WHAT? The lady couldn't give me a definitive answer, she gave me three dollar amounts and I said I'd let her know. I called my provider who still couldn't confirm anything and then said my company may be out of network WHAT? I never had this issue before. She said she'd look into it (2 weeks later still no answer)so I called the insurance back. I explained exactly why I couldn't have NOT met my deductible. Then I was told that my provider is out of network. I had a hard time believing that too but started looking into other providers and made an appointment. Suddenly, my provider called and said I was completely right. I paid the $339 and made an appointment for equipment installation. Can't urge people with disabilities enough to not take insurance CSR's at their word. Make them prove their claims.

New Possibilities

The disability awareness project is enabling me to meet to people, learn new options, and enjoy new experiences. Each day that I'm there, kids who I never would think would be interested, saw another kid in the chair wheeling around and asked if they could try. I met grad students from Franklin and Marshall who are surveying kids about autism. I spoke with them about collaborating and they were interested. I met a volunteer who is a film student and said he'd help me create a short film on disability to give to the Lancaster Foundation facebook site. I spoke with the lady who runs the STEM program during the year and asked if I'd like to give a 90 minute class on disability. Whenever I try something new I do my best to shape it around my situation. I'm confident this is a good but unique idea.

Support

I just met with The Lancaster County Foundation and was pleasantly surprised. They are willing to slowly infuse the disability component into some of what they do. They do so much and are so well received that just finding a little opening is enough for now. It will gain momentum eventually and I have so many ideas I can keep trying different ones. I came up with snippets on their facebook account. This would begin with a film of inaccessible things around town but seeing them as tongue and cheek. It is important that I don't come across as "The Angry Wheelchair." I want people to see that I look at the flip side of life rather than complain. Hopefully I will get the chance to do a disability program with the "Disability Dialogue" film and "Working on Wheels" with people who volunteer for the experience. The key is slow, positive, and interactive.

Wheels turning and turning

The experience at the Science Factory was great. I spoke to a few of the camp counselors that came inside, asking if they'd bring their group of kids over to try the chair. Once one child tried the chair others wanted to also. I had steady business and for the last hour, the wheelchair was gone the entire time, there was always a child in it doing a science activity. There was no need for with no explanation of disability and no formal conference on the importance of attitudes. It was a popular "traveling exhibit" all it took was seeing and sitting. Automatic inclusion without research studies or adult involvement- just kids being kids who have a natural curiosity. I wonder if any of the kids who tried the chair will come in contact with people with disabilities and remember this particular experience.

The science of disability

I am going to have a table on Disability Awareness at the Science Factory. For the first few weeks I will display a poster offering tips for people regarding communicating with people with challenges and information on Braille and sign language. Eventually my exhibit will expand to include other types of disabilities and an ongoing video. For now it is a good venue in which to reach more people- both adults and kids. I will also be interested in hearing the stories offered by those who pass the table. Hopefully I will interest the guests to give input and ideas on the subject. I have an old video perfect for kids but it is a VHS and there is no opportunity to show that these days. My first plan was to have a few experiential activities, sitting in a wheelchair, walking with a blindfold. etc. However, it may become too chaotic with the sheer number of kids in the room at once. I appreciate the Science Factory's willingness to stretch their usual theme to include the topic.

Reactions to budget cuts

The Senate revealed their version of the budget cuts- they were indeed horrifying. Heath care for people with disabilities and the agencies who provide services were once again on the wrong side of the tracks. Many people who live in the community who require extensive assistance to do so may have to make changes. However, my concern was with the visual reactions by the advocates with disabilities. Individuals were being physically carried out of the building while chanting and yelling about the negative impact it would have on lives. I certainly understand the reason for the distress but it leaves a very poor taste in the viewers mouths who were watching the nightly news. It also makes my population look like cranky babies. That does more harm than good because it does not look like we are an intelligent group of people worthy of respect. There are other means of advocating that offer better results. One example is testimonials- when affected people write letters to Congress explaining that they will no longer be able to work if they do not receive attendant care to help them in the mornings it makes a difference. When the job performance is explained and includes commentary from co-workers and clients who admire their work that is worthy of respect. You get more bees with honey than vinegar.

Looking ahead

It's time to prepare and implement programs; I've been over and over and over and over and overthinking this for far too long. I will now focus on what I still have and look ahead- not behind. Sure I've missed many opportunities but my pattern stops right now Here are my summer plans: 1)Create a vocational booklet for the veteran center in Lemoyne. 2) Meet with Turkey Hill regarding our paddling program and their veteran program. 3) Practice the speech for the staff at Careerlink. 4) Write to school districts about awareness programs for older and younger students, find a video to show and create a brochure. Copy the brochure for churches and companies. The busier I am the less time I'll have to remember missed opportunities and the happier I'll be cause it's my passion.

Random Q & A

In the interest of involving others with this blog I asked what would be interesting topics to cover. Here are a few: Q) How do men and women with disabilities handle day-to-day challenges differently? A) One can't make generalizations; however, as a woman I am determined and patient with myself to figure out solutions. The problems don't resolve themselves but with repetition they do get easier. Every time I relocate I must rework the shower transfer. In the beginning I always feel scared that I can fall so easily. After a few times I was always relieved to have figured out the challenge. Q) Do disabled people enjoy the company of other disabled people (in general) or are they more interested in socializing with not-disabled people? A)In general people with severe disabilities may spend more time with family and caregivers. These people are not disabled but may be there for reasons other than altruistic (job/obligation). They may be able to better identify with people with disabilities. People with disabilities who are fully integrated with jobs and relationships, are more likely to be with friends without disabilities.

Veterans in Harrisburg

I visited Dauphin County armed with brochures and biz cards. The list I was given from the Center Director was HACC and a program in Lemoyne. I called the college and I can mail one from Lancaster HACC. Then I called the other center and immediately went there to learn more. I was glad I did and wish I lived in Harrisburg again. The have a food bank (boxes of food worth $90), a clothing bank, a café, many events and plans for a vocational skills program. Immediately I offered to assist with that. They were very interested in the paddling program and planned to drum up more interest. I was very excited because I want to get some paddling in this area. They are part of the territory (Susquehanna Valley) but most of the activity was happening in Lancaster- much too far. Now the brochure will be more accurate.

Re-structuring the message

The panel never even eluded to the disability population being included in the workplace. If the introductory speaker can make an entire living on just including 1 population (African Americans)into the a worksite, I should be able to spread that message and offer solutions on people with disabilities. I have 7 strategies to explain and help with implementation in addition I have a film explaining the importance of communication. Hopefully I local employment law firm will support me on the journey. The issue is relevant, easy, and interesting (the way I do it). It is time to make this happen and people need to know regardless of how unglamorous the topic may be. I hope my 15 minutes, which were filled with real life examples and practical solutions, made at least a bit of difference, Somehow, someway it WILL happen.

Producing a video

I've wanted to produce a video on disability. Years ago I got college students in the broadcasting field to create a simple film. It was effective and an interest way to promote disability awareness. Recently I met a documentary film, producer who suggested I consider creating something more sophisticated but on disability awareness to enhance my programs. I would have a few recognizable agencies to partner with first, then start a Kickstart Campaign to really get things moving. The Ten Commandments video really needs to be updated but the concept is fine. The themes would be inclusion in the areas of employment, socialization, psychological, community, and family. I could definitely design something, perhaps I can interest a few college students to produce it, like before. Communications classes still require projects.

Assumptions

"Assumptions" are very damaging they are barriers to acceptance and awareness. Regardless if it's in the employment or adoption arena professionals decide based on biases - untrue information and this can ruin a person's life. Women are told that they can't take care of their babies and job applicant are told they can't be hired for no reason other than they do things differently. It shouldn't matter, studies have proven time and time again that these negative statements are just myths. However, it is hard to change one's mind so people continue their thought process. The question is how to open a person's mind in offer to consider the other side. It helps to have testimonials (stories) in the situation of people who succeeded once they were given the chance. Change does happen slowly but good people who don't deserve judgments from professionals suffer unnecessarily.

hotels

I'm trying to get a hotel in Denver for my trip in late August. My reasonable accommodation is for the top mattress to be removed so I can make a somewhat even transfer on to the box spring (which has the blanket and sheet on top), People try to tell me that taking off the mattress is illegal. Actually NOT taking off the top mattress and refusing a reasonable accommodation is illegal. I found a place but it's unacceptable to the people I'm visiting. Why? It's in a seedy area and too far from the person's home. We are going half way across America to the person's city, I say we're more then meeting them half way. What's interesting is how a person without a disability thinks. Wouldn't finding an acceptable bed situation trump distance? The person's home is cluttered with furniture for my wheelchair and I won't be able to go to the bathroom there. Why would location to the house be that be the criteria for my choice? Then I'm told not to worry cause we have four months yet. Spoken like a true non-disabled person; I wish this issue could just be left to me.

New blood

I met an auto mechanic who, after I showed the inside of my van, really wanted to learn how. I called a number of places including NMEDA, the certification place who had no idea. Then I called a Mobility Works service man. He explained the process and it was just as complicated as I suspected. You get a job as a technician at a dealer and then get trained in each modality separately. I asked the likelihood of getting hired to start with and it depends how far the person is willing to travel. The closest place in this area is in Harrisburg and they rarely hire. I called the individual back and he was not deterred. I don't want to sound too negative about this job because I consider these people to be surgeons. It's just that I worry the whole field will be phased out. If OVR doesn't have the money to pay for the adaptation work there won't be much business from individuals. However, perhaps these skills could be used for "the car of the future?" That may also have similar driving controls.

Giving attention

My friend's 67th birthday is Tuesday. She's so nice to people yet has been taken advantage of, ignored, and talked down to, due to her physical disability. I spent a few hours with her and I didn't feel like I was doing a good deed, I felt like I was with my friend. Last year I got her an ice cream cake that her friend enjoyed like it was the best thing he ever tasted. But this year I got her a cute musical card and a sweater. Periodically I brought her clothes that I didn't want this year it was a purple sweater that was really pretty on the store rack. She totally deserved something new even if she doesn't wear it. Then I took her to McDonald's for her favorite drink. She thanked me a lot and I drove home. Eventually I will bring her one of the 3 puzzles I have that I didn't open. Then I will spray it so it can be framed on her wall. It will be a fun ongoing project.

Times have changed.

I asked the Careerlink director what, in detail, she wanted me to speak about in addition to showing the film on "10 Commandments of Speaking with People with Disabilities." I figured a quick list of strategies for implementing disability inclusion. Instead she was interested in the topic of encouraging employers to hire individuals with challenges. When I was a job placement counselor I never gave a second thought about meeting with the prospective employer, leaving the person with my sales book, and discussing the positions available when I came to pick it up. Apparently this is no longer the protocol nor is it as easy. I feel like my experience will be quite useful. It is interesting that each speech is different though they're all about hiring workers who have disabilities. So I'll slowly get back in my field but it will be from the employer's viewpoint. I will enjoy practicing this talk.

mattresses and mini meetings

Denver will happen but not the way it was planned originally. I was supposed to stay at the cousin's suite however the room has a queen sized mattress. It may be fit for a queen but it's much higher than my wheelchair seat so I know I can't transfer on it on a good day. Plan B is to call a slew of hotels to find out the cost of 1 week there. It will be so much better because it will be on a bus route and it will offer breakfast- I won't be confronted with seeds and grains every morning. I met with someone who gave a presentation at my group on women and leadership. M

Infusing disability awareness

Yesterday was a Health & Wellness Conference- naturally I spoke to vendors about disability awareness at their sites. Many sounded receptive but I'm pretty confident that a few will materialize. I am no longer interested in collaboration since I did the work planning, speaking, and marketing this program. Furthermore, it is actually a Team River Runner Project since they sponsor it. I have finally figured out the content of my website and, like the video I produced then used to death years ago through Northampton Community College, I can't wait to have it published. I'm also helping a teenager with no arms, secure a job at Dutch Wonderland for the summer. How odd this is the disability since the segment on the Sunday Morning Show was of a boy who wanted to be on a basketball team but was rejected due to no arms. This girl will be a good recommendation and she would be the perfect presenter for Infobility. She's done inspirational speeches before. I knew I needed someone with a disability to be my "front person." It's true that when you put a request in the universe things happen. It's odd, I never before decided not to collaborate and I'm being rewarded...strange.

A necessary topic.

I presented to SHRM members about implementing disability inclusion in the workplace. First I did an experiential exercise in which people were asked to assume a certain disability then posed the question, "What type of barriers may there be in a workplace with a disability?" Silence from almost everyone. Wow nobody seemed to have any idea. Sometimes asking to assume a disability is threatening. Sometimes people don't wish to speak up. One table spoke about safety measures in case of an emergency. Otherwise there was nothing about bathroom doors, nothing about parking spaces, nothing about attitudes (which I mentioned later). At the conclusion I asked for people's experiences with inclusion of disability in your workplace. Again there were a few stories but nothing like I expected. A few people came up to the brochure table. A few people had questions. Did everyone feel guilty about there poor inclusion policies?

Disability mode

In the past ice breakers have not been implemented prior to the presentations. I offered to start with one- it will get everyone in disability mode AND it will eat up more time. I am having fun figuring out questions that get people thinking. I will assign a table a disability then give them a scenario that may pose some challenges. I ask the people the following two questions. 1) What may be some challenges that a person with a disability may run into? 2) What are some solutions that may be implemented? I'm not sure how many tables there will be so I will need many thought - provoking questions. Another type of questions are general such as the following: I am part of the employee resource group. We must be inclusive with our social activities. What are some areas we should consider? This will be a wonderful way to begin.

What's the big deal?

A member of my temple is having cataract surgery. I offered to bring food- I'll be out anyway. I called the lady just to check if anyone else was bringing Monday. She was shocked by my offer and just couldn't seem to get over it. I cannot for the life of me figure out the big deal. I like giving more than getting why should things be any different of me than anyone else? Mitzvah Day is the same thing. I offered to get involved with a project nut the man in charge never replied. The concept of helping goes against the grain of "disability." I guess I'm just supposed to be on the receiving end. It really gets to me that the stereotype is just so very strong and no matter how many times I disprove it I can't escape people's judgments.

Making it real

It was suggested that I start the breakfast speech with something funny, though I couldn't imagine anything appropriate to use to start off. Then I had lunch at a restaurant and at the table next to me was an adult child with a physical disability and a set of elderly parents. The father was getting up to the buffet and bringing a variety of foods back. The son had on a large bib while he carefully fed himself."I wonder what kind of work skills that man would had" I thought. "I wonder if it was ever considered." Not likely was my immediate thought." Observing his determination with his meal told me that the man was motivated and independent, 2 important traits human resource professionals seek. This is something I could bring up before the speech begins. This may hit home.

A for Advocacy

I just HAD to follow through with the ambulance issue. 3 different departments were responsible for the reason why I was upset. First there was the case worker who insisted I'd be getting transported by ambulance without my wheelchair. That was the crux of the situation she admitted it to me but told a patient care worker that it was medically necessary that I be transported (without my chair). Second the nurse had no intention on putting my clothes on for the ambulance ride (I insisted she change her plans). Third the ambulance workers did not ask for my insurance and said they weren't allowed nor cared about my wheelchair arriving. I wrote letters to all three departments, printed them out in the hospital library, went to the administrative offices, and was then encouraged to meet with the patient care manager(they wanted the patient care woman to be present to offer an overview). Then I explained she didn't really understand the situation because she was told by the care manager something different than I was. Upon listening to me for a few minutes that lady knew there was no need for the lady. We had a productive meeting- she was respectful, she knew I knew my rights (I deserved to be informed of my options), she said most patients allow things to happen, and I think she was impressed that I was looking out for others who were going through the same thing. She admitted the need for sensitivity trainings. I may be invited to do one- who better?

My disability doesn't decide things

My friend moved in my apartment and an accessible double became available at the same time. Initially the plan was to move but I really didn't want to move my hospital bed or lose my walk-in closet. I was situated here and knew deep down I knew it would be fine right here. Everyone thought it was a no-brainer but a roll-in shower rather than a tub and a designated parking space in front would be the selling points. I would not be able to reach any of the sinks nor would I have much closet space. This morning we just finished moving things around and now our computers are on tables side by side PLUS the exercise equipment and the scooter are inside. I am happy as a clam that I trusted my feelings on this decision. Sometimes bigger is not better and a disability is not a decision maker. Often others, especially professionals, advise people with disabilities to do things based on the challenge hence the unnecessary ambulance ride.

Leadership group

The presenter offered information on stress but at one point she mentioned that she is a physical therapist assistant. My ears perked up for 2 reasons. First, I realize the physical residuals of neuropathy, a swollen hip, and continual urination are serious stressors. It's hard to concentrate on anything except my bladder which almost always feels full. It's hard to pull up my pants due to the swelling of my left buttock. I am dropping things constantly because my hands can't grasp things. Second, this may be my opening to share my disability booklet with medical professionals- something I'm always seeking. I'm just so glad that I joined this group. I was never happy with the rigid structure of the business groups and the speech(toastmaster's)group. This group is an interesting combination of business, social/networking and information. I finally found something right- it took long enough but it was worth the wait.

Generating interest

I have been making attempts to find companies in Lancaster County that will collaborate with Team River Runner. I have found a few and I am trying to meet with key people and interest them in helping and participating in activities that will be happening. We begin with small requests with small "permission" marketing and the plan is to build to sponsorships. I have my first meeting with a staff at Penn State Rehab Center. I have been reading speaking techniques but I don't need to read anything in order to keep it sincere. I hate exercising with a passion because it's boring and one doesn't see measurable progress. However, if I'm distracted while exercising whether it is through conversation or tv, I will exercise with no hesitation. This is why Team River Runner's paddling program is so successful. Veterans are getting physical and emotional therapy while paddling a kayak and convening with nature a very effective way of exercising; anyone can identify with that. Generating interest within by involving veterans in a psycho - social program and volunteering in the community may be a bigger challenge. This program is unique and wonderful for me and hopefully others.

Outreach for veterans

I attended a job fair to meet companies who may donate to Team River Runner. A few were very real possibilities and one big one asked if we have sponsorship opportunities! Wow I was shocked but I guess the companies know how worthy a cause this is. Most everyone knows someone who was enlisted. Monday I meet with the Development Director at Hershey Rehab and hopefully it will lead to call to the chapter director and then a sponsorship. I must really work hard on my presentation skills since I am the first point contact but I think in this case less is more. I will say a few words about the benefits of non-traditional therapy for vets who have physical and emotional challenges. I'll go over the salesbook then a call be made to the director. ALSO we are going to implement a wonderful psycho-social program by and for veterans. This will be something that has never been successful because it is usually run by non veterans. There is a real lack of understanding and respect for the other side. This will be a great idea.

Rec Fest

The event was amazing and I am so glad that Team River Runner participated. We had most of the pool and gained 21 new members. I learned that someone even presented the program with a $300 contribution! I was upstairs working the room as an Outreach Worker. A few programs were interested in combining with us to hold events. Hopefully since this event worked well but was not 100% vet focused the people who approves things will be understanding again. There are always a few new veterans we meet along the way. Easter Seal has a camp for veterans families and they have a camp for adapted sports. They are actively seeking a paddling group to visit, talk, and demonstrate the program. I may have to apply a little pressure but these offers are time limited so if we do not meet and start to arrange the event we will be passed up. I have a meeting with the development director of Penn State Hershey, it would be gold if we can get them on board- they are really well respected. The Camp Hill CIL is another organization where we can visit and find new members.

Inspiration

I met with someone who was as inspirational to me as (I think) I was to her. She reminded me of how meaningful my knowledge and ideas are. I can't wait to re-start Infobility with speeches at locations that are not companies. I will have a current list of programs as well as the opportunities to meet new people, glamorize my website a bit, and make money for Team River Runner. My work will be meaningful and may lead me to something paid; even if I monetize it. She mentioned how mundane things I do are interesting like put a watch on the joystick rather than my wrist. I will eventually implement "Shopping on Wheels" and "Survivor; Wheelchair Edition" and "Veterans Venues." My plans are endless; 50 will be nifty!

Rec Fest 1st Annual Event

I was in Hershey and took a bunch of flyers on an event this Saturday. I wasn't sure it would be that big a deal since most of the programs that are brand new take time to gain traction. However, this one is presented by Penn State Hospital in a local Campus so that will certainly help with generating interest. I was told that 100+ people have signed up. Although it remains to be seen who shows I am convinced that it will be a really meaningful experience. I am always interested in the vendors who attend and I'm sure there will be many groups to generate Team River Runner interest. They will mostly be local and it will be a closer location than the one in Raritan New Jersey. I am glad to participate on a yearly basis in this; it was tried unsuccessfully by local non profit organizations. I will have a plethora of new contacts to cultivate who are exactly in our wheelhouse.

Doing what's unfamiliar

I volunteered to interview six staff in an accounting company in order to determine a prestigious ethics in business award. I knew it would be a brand new experience that was completely out of my comfort zone. I was afraid of hindering the company's chances of winning since I knew my ability to take good notes and ask appropriate questions was going to be foreign to me. I kept coming up with reasons to cancel (missing a SHRM meeting, fragile fingers, out of my element, etc.) but the entire time a little voice in head insisted that I attend. I am glad I did and I'm glad- well mostly). The interview I conducted was a collaborative effort by the entire group and I am not the only one writing a report. Furthermore, the final report will be a single collaborative effort by all the entire group. I will now use this experience as the example of the importance of tenacity. Sure I had a humiliating experience in October when the entire panel was a "no show." However, I have now chosen to travel a different route with the same message and a different kind of audience. May 9th I'm giving a big talk to human resource professionals but it will be fine since I know what the issue was (relying on strangers) and my own confidence.

Good wins in the end

I really wanted a veteran to receive my furniture and extra things. After 3 calls I finally got a local agency called "Off the Streets" to come specially and pick up the bed. The guy called and my pleading encouraged the guy to borrow a small pick up truck and pick up the bed. I can't believe how many destitute people wanted it. The futon went to a Navy man who works at a restaurant that offers good fundraising opportunities for non-profits and he may know people who would help with my veterans awareness play. If I had done all of this quicker I wouldn't have met the person. Grandma's blanket went to a friend- a special item adopted by a special person. Good definitely wins in the end.

Public Bathrooms

A local agency is actually pursuing options and finances- who would have thought? ADA has "mandated" that they all include 1 stall that is twice as big. Many include 1 that is 1/2 a size bigger. I just listened to an agency that has plans to either designate a bathroom downtown that has a few adaptive toileting options. Problems addressed included vandalism, approval, and money. People in the audience came up with a few solutions including a key entry so it's locked unless it's being used by those who need it and a mobile site which can travel to locations where the people who really need them go. That is one of the components of inclusion the decision makers did not really consider. I myself would love to travel overseas but would never be able to use a bathroom for 10 hours and that makes it impossible. The answer non-disabled give is to just use a catheter and I guess many do but I won't. Maybe I can help by locating someone rich and disable who will provide the finances.

People who paddle

I'm always looking for a unique way to do something mundane in life - especially when it comes to exercising. The 1/2 of my body that still worked had an aversion to physical therapy. I figured that transferring to toilets and beds was enough. Then came my latest challenge- neck surgery. 1st there was arthrogryposis, then came scoliosis, now it's spinal stenosis. "osis' that rhyme? I like poetry but this triumvirate is ridiculous. Anyway, what I want usually doesn't exist so I have to create it. I have always had aversion to physical therapy so I quit doing this boring activity. I figured after all these years how I manage, is how I manage. After the surgery I was an inpatient at a rehab center. I figured this was going to be a colossal and costly waste of my time. Nonetheless I joined in and looked like every other person living in the halls. Surprise, surprise I awoke muscles that I figured left town long ago! Recently I observed the group of people who paddle and I realized this IS my kind of physical therapy and I can not wait to actually do it.

Role reversal

When the doctor becomes the patient it's an entirely new world. Even though the medical professionals are still familiar, when one's role is changed the person's world changes. Similarly, when on worked in the teaching profession there can be an incredible amount of resistance to becoming a student. We all know the importance of learning on a daily basis. We actually do take in new things every day; we just don't look at it that way. When a person is formally in the role of student there is a stigma, even more so when there's an age difference. As a person with a disability who has been in the patient role and the student role I do not think much of this flip-flop. However, it never occurred to me just how much this difference mattered to the average person. It is sad that there are such vulnerabilities; people lose their identities so quickly.

Bigger isn't always better

That is often an assumption made by the public but it can be wrong. For example- a large parking spot that is next to an island; a large bathroom stall with a very low toilet; a large roll-in shower that has a faucet that will be behind me. Often a person with a physical disability needs to really think before they choose something that is considered accessible. I turned down an option that seemed wonderful to most anyone else. It had a parking spot and curb cut in front rather than 80 feet away, like it is for me now. I was totally ready to take it that I really thought about it and asked to see it again. Upon visiting another time I noticed I couldn't get under any of the counters (bathroom or kitchen). The showerhead was either going to be behind me on next to me but too high. The washer was a top loader the dryer was impossible to open and they were both apartment size. The place I have I almost passed it up but on the second visit I realized how I could manage. I really have to have a lot of good foresight when I make a decision- only I know what works best.

Inclusive temp agencies

People with intellectual disabilities attend college so why shouldn't they be placed by temp agencies? I always wanted there to be jobs placed for people who needed job coaches and considered approaching someone about Vocational Venues. Now I am getting to know someone who is a member of Lancaster Society for Human Resources Managers. I may as well try to get this idea implemented. The key is not just being persistent it is about being creative and smart about this. If people are placed in the community for employment then it's a logical next step to be able to visit a typical unemployment agency rather than a specialized vocational agency for people who are disabled first and employees second.

Advocation against transportation

The local disabled transportation company must ne reprimanded and investigated. My issue is not the continued lateness; I realize overbooking is a necessary evil for funding purposes. However, the office staff never give the drivers any advanced notice for a pick up. 2 out of 3 times they told me they new nothing about my location and were just told to pick me up 15 minutes ago. Both times they did stupid and dangerous things as a result and both times I was extremely angry. I now the people who use them have no other option so they cannot complain but someone higher up needs to know just how BAD they are. More importantly the drivers need some recognition. I have empty award certificates that I want to use. This will happen.

Program success

My first meeting with Team River Runner seems to have been successful. Before I left I mentioned the option of having a restaurant fundraiser and asked if anyone was connected to an eatery. The person on the right mentioned that the person on the left has a dad who owns a restaurant in a nearby town. I just got an email that "dad" came through. So now I'm going to locate establishments in the area to ask if they'd put up a flyer. This one will result in over $35 (their last one) because I am starting now to identify local places that will help us bring in customers. We all have to eat, right? Time to prove my new worth in my new project. I've been saying how much I like this group because it helps veterans and much more awareness needs to be given to this population. I have my chance to show good people,who believe in me, to what I can do for them. Helping them will help me in the process.

Alone again

My best friend spent a month "taking care" of me. I wasn't sure it was going to go swimmingly as it did but he really came through and helped a lot. I'm going to miss his meals but it's time I start to fen for myself. I will quit television but will have my books and youtube on the computer. In weeks I'll have my van back but first I must familiarize myself with the other singers in the show. I found four more buffets that I must try as well as a tasty new diner and Golden Corral that's too far to walk to but a perfect distance for a drive. I am very very cautious about driving, I bought gloves so that my palms will not slip off the wheel. I can take Amtrak a lot of places and I will. I managed before alone in my place so I will do it again....only slower.

Transportation

I expected difficulty getting around till March 4th but this is pretty bad. I'm missing so much and life is just going on like it is another day. I can get bus 14 ever y half hour but to get there I must wheel down a long road with no sides. It's been 30 & 40 degrees that's just too cold for me. I did wheel three days in a row all were 50. Furthermore, there are no street lights on those roads so I must be done by 6pm- defeats the purpose. Red Rose Access is supposed to be convenient and safer. I knew the driver wouldn't be super punctual however, I didn't expect to have to flag the bus down on a road nowhere near my apartment. Coming home I didn't expect the driver to be 30 minutes late. The meetings I attend are an hour and the buildings close afterward. They can't evacuate till I'm gone. If I go somewhere else the driver of Red Rose wouldn't be able to find me. I'd be waiting outside in the cold for awhile. I just need to drive down 1 road not Bethlehem.

Weight loss

My friend is interested in losing weight so I looked into the most popular programs. One requires that people buy their food- how economical and permanent is that? The other requires that people count their calories of everything they put in their mouth- how simple and permanent is that? The lists of foods, portion size and point values is endless. A person can also purchase a computer devise that will give the information automatically. Not everyone can do that either so what do you do? I still believe that if a few friends work together they can do lose weight for free. It takes determination and time but it IS possible, the problems is it must require a level of devotion. Furthermore, people with disabilities may not have many choices in life so what they eat will be hard to limit. Regardless of the issue, the desire to succeed with anything requires unusual tenacity.

Writing the stories

I wanted the monologs for the veterans awareness play to be directly from the veterans. I decided to write samples for when I need to show the sales book to prospective sponsors. I know I enjoy writing and I have knowledge of the veteran and family experience. However, I did not realize how easily it would come to me and how detailed I could be in each topic. I did four with twelve more to complete. I still want the responses to be directly from veterans but if I am unable to get enough, or if I have extra that is wonderful. One of the reasons I love this is because I am in charge of everything. TRR gave me approval as long as the other group involved shares the same vision. That should not be a big issue.

Veteran Awareness

Another population that needs more exposure is veterans. People may think of them on Veterans Day and attend parades however, the transition to civilian life is rarely smooth; for many life is interrupted by nightmares of battle or physical conditions, or both. This is why there must be a concerted effort for an event that focuses on the issues. I have created an educational play in which people pose as veterans and family members address difficult topics. For example a spouse has a monolog on the hardship of paying bills with only 1 salary and dealing with anger issues from the kids, veterans talk about how hard it is to get a job with constant horrific memories of combat interrupting concentration on job duties. I am hoping the idea will be approved by Team River Runner and I can start working on this project. Just as my goal during my time in Hershey was to network. My goal during my time recovering is implementation of this project.

Special education

I am concerned because it is usually a struggle to maintain and implement Individuals with Disabilities Education Act. Now with the possible appointment of Betsy DeVos, there are going to be real concerns for students with disabilities getting services in public schools as well as public schools in general. She admitted that her appointment was due to her family's extensive financial support of Trump's campaign and her experiences is largely with advocating on behalf of charter schools. Traditionally these types of schools are not disability "friendly." We can write are legislators if we feel the need to be heard but other than scheduling a second confirmation hearing due to congressional concerns, what we can do may be limited.

Great option

The Pennsylvania Planning Disabilities Council has a great opportunity for an individual to get funded. People can dial in and listen to other people's projects. I wonder how many projects I will be listening to but I am eagerly awaiting 1pm. Perhaps some groups who were not awarded grants. I was considering introducing Vocational Venues in which businesses watch a video and discuss concerns about hiring people with challenges. I'd bring up tax incentives and examples of reasonable accommodations. Then I was thinking of something related to Team River Runner. I am not really approved yet as an "Outreach Coordinator." My third idea helps veterans even more directly. I would offer to create a booklet of resources and concrete suggestions to provide a veteran with the resources needed as well an tools to empower him so he can manage is disability. This idea was also a grant offered by the PPDDC in October. I just hope that I can clearly convey the project so it will get approved.

Future spinal issues

The hospital bed is something I realize I must keep even though it makes me feel bad. I feel more like a disabled person but in the long term I can not rise from a sleeping position without shifting all of my weight to the right side then yanking my head while pulling my arm. Even if I feel like my neck is stronger that long term movement will loosen the screws hurting my vertebrae. Also thinking long term I would like to get involved with spinal cord issues, especially advocacy. All it takes is a few dedicated people to write letters to Congress and fertility clinics about the importance of not discarding a fetus because that is how to get blastocysts. If people understood the importance of these cells, perhaps they would be more conscious. More tests could be done to cure spinal cord paralysis. That's a perfect project for me.

Some networking success

One thing while in Hershey rehab, went as planned, well it was never actually planned. My goal was to network with professional at Hershey to share my Infobility literature. Although I did learn of an event they were having called Rec Fest; an adaptive sports event. I connected TRR (the kayaking group)and IM ABLE Foundation with them. I just received confirmation from the event organizer that TRR will be a vendor. That will go a long way with my next plan which is to grow them financially through fundraising and increase membership through outreach. I need to concentrate on a big, already established group rather than start something like Infobility from scratch. If, in the process, someone is interested in joining me in disability education or if TRR would let me put something on their website that's great but it won't be my goal. I must do that by coming in from the back door because my past techniques have not worked so I will not waste any more time pretending to be a speaker.

A brand new shower bench

I just purchased a brand new shower bench as soon as I realized the old one was corroded. It came and nobody was as excited as I - you'd think I won a million dollars. I brought it home and set it up just as the old one was, higher on the left 2 legs than the ones on the inside- I huff and I puff and I take up to an hour! I assume it's cause of my surgery and I'm weaker so I continue to keep trying new configurations. Then after 4 transfers all differently I slide back and realize the surfaces, which used to be perfectly even, suddenly aren't- this is nuts. I figure out a final solution by folding a blanket to use as a platform but this should have ever been in the first place! Just like my latest wheelchair which 2 years later is still causing me to be stuck in dangerous situations. People who have never needed disability equipment make "mistakes" that none of their coworkers understand.

Next shift

Mom's leaving and friend's coming. I've tied up the "loose ends." I figured out how to get myself all the way up in bed even if I slip down a bit. Solution- I have a long ribbon wrapped around the bed and tied to a long stick so I can get myself into a sitting position. I've figured out how to keep my foot from falling between the footplates. Solution- I have a pillow on my both of my two footplates then a bungie cord to rap around the pillow and the footplates to secure it. The shower will be easier than the other 4 times. I will get it lowered so I won't have to transfer uphill. Going back into my wheelchair was always (psychologically) easier for me. Also my "boss" whose job I declined wrote me and I was able to give him connections he could use. I'm almost "back in the game" AND I found some new ones at Hershey, I'll speak there and work on the Rec Fest too.

Much closer

Neck brace taken off- doctor's orders. I had a feeling he'd be less strict but I was not counting on its complete removal. I have approval to used Red Rose Transit and my mom is gone. My favorite country singer is in Harrisburg on the 20th. How can I get there and back in one piece. Interesting challenges. I can borrow my van for a day, I can hop an Amtrak, or I can ask Colleen. I can always ask...it would practically be Against Medical Advice but it isn't like I'd be leaving a hospital. I'm just doing what a fan would do. I will still baby my neck as much as possible and I'd wear the brace. We'll see.

No different

Home health care PT did not come, did not come, so I called and was told that there's a 2 hour window. I asked why should I have to wait that long, I have plans. As usual no one knows anything not even scheduled for a home health aid at all! The girl who answered the phone just gave excuses that my case has not been processed through the computer yet. Then she finally said that she'll get a physical therapy assistant. Later she called me and I asked her if there's an evaluation to fill out. I wonder if she "got it" probably not. I would love to write an evaluation like none they ever read. Still these professionals think disabled do nothing all day. The PT came and I practiced getting on the bed and tried to figure out how to arrange my body so I could sit up and transfer into the wheelchair. One idea is to but a pillow at my bottom so I won't sink. PT was worried my heel skin would rub would. I said it really won't matter cause we both know you won't be here in 3 weeks. She sounded so concerned but I knew it was not how reality worked.

my projects

For Team River Runner - I developed two list of 1)outreach locations 2)fundraising ideas. Bill wrote me back immediately so that felt good to be appreciated. For Futures Planning - I developed a booklet simplifying the concept and taking the categories and putting explanations and thought provoking questions with line. I feel like I'm back, now I will check on "Angels on Call" to see if they are actually working on the special education track for students with intellectual disabilities. Perhaps he came up with a 7th idea. Lastly I'm calling Paul Klug from Bayada to ask if they are still opening in Lancaster. I'll mention that I am using the OT and PT services for recovery from this surgery. I want brownie points.

Surprise friend

The last few days I started talking with one CNA. We exchanged emails and then I wrote to her. In one day she replied, wow was I shocked. I replied to her and she replied again to me. The CNA with whom I expected to stay in touch disappeared. Hopefully we can meet somewhere when I'm better, she'd like my van. I want to meet the other ex-patient with whom she stayed in contact. Now I have a real connection with Hershey. I'll be there for the support groups also and the Rec Fest in April. I should also be able to grow Infobility through t he hospital. Maybe I can do a sensitivity lesson and part of a support group as a thanks for helping market the event.

Survey says....

I was promised more than once that the survey would get read carefully. So I decided to answer it in 2 parts; this would be a one of a kind response. First the objective questions with multiple choice answers, like an SAT Test. Often the questions asked did not address the issues and were repetitive. Nowhere, did they bring up the service of the food service, respect of the CNA's, or dignity of patients. I submitted the two pages with a note that the rest would come. Yesterday I composed, on my own computer, an entire page on the importance of disability sensitivity complete with suggestions. I was careful to praise their dedication so I they see I'm not just being bitchy. They don't realize the impact their demeanor had on people. Most people didn't care I'm sure and that means no one would confirm my point. Nonetheless I got my point across and people will see Infobility.

"Who I Really Am"

Introduction- Medical professionals often work with people who have disabilities. It is important to see the patient as a person too, not just a patient. Medical personnel must be exposed to more then merely the medical terminology and techniques; there must be a sensitivity component to the training. Important points for CNA's to ponder: 1)Dignity and respect- Then first part is about dignity. This person has a name and it is not "honey." Using a sing-song, slower paced voice when communicating is treating them like a child. The second is about being respectful. If you aren't sure the best way to lift a person ask the person not the other aide. 2)Empathy vs. sympathy- The first is putting oneself in another's shoes in order to understand how s/he may feel in that situation; it's respectful. The second is feeling sorry for someone based on assumptions or appearance; it's hurtful. Why? 3)People first language- The person has many roles, attributes out side of the hospital. The disability is only 1 part of the person; therefore s/he is a person with a disability not a disabled person.