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.