Determination

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

Condescention

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

House Party

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

Progress

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

Wheelchair basketball

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

Networking

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

Locations

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

Infobility update

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

Advocacy

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