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.