van

When people admire the fact that I can drive I acknowledge there statement but I sometimes comment "it's great when it works." Well, this is one of those times. Well, it does but it doesn't. I can travel from place to place; however different bells and whistles can go off at any time. It is not just annoying for the horn to blow when I press for the blinker, it can be dangerous. I doubt that the police would be understanding of my situation (they haven't been in the past). At this point I have remained home due to these issues and when I do venture out, I am on one lane roads and do not press my blinkers at all. T his issue could take minutes to fix, hours, or days. At this point I am concerned about getting myself to Allentown. I will drive carefully and hope to heaven that the problem doesn't continue repeatedly while on the highway. Yes I am thrilled to be able to drive but there are times when I have been happier about the skill.

facebook

I almost never visited my site, I never completed the site with my information nor did I use my current last name. Everyone kept talking about facebook, facebook. One day I decided to read and post on Spinal Cord Peer Support. I was amazed by all the different people with their many perspective and topics. Then I decided to try posting my Infobility. Wow- I can reach more people with more comments than I ever saw, just by responding to others posts. They come right to my emails so I know immediately. I feel much more connected. I may actually get somewhere with Infobility. I completed my booklet on "Employer Centered Employment" and I posted this on a site designed just for this topic! Then I found someone in Ohio who wants to be a consultant like me. She has her own ideas but I asked her if we could collaborate. Now I know I'm on my way...not just in Lancaster (my home).

Ideas for Everone

I saw my 3 minutes of Live with Kelly and Ryan Wednesday and noticed a lady in a wheelchair was the chosen dancer for the day. It was really nice to see how far society has come. I went to the "Live" studio one day and sat in the audience. She was pretty and just doing something she probably does regularly. I read a book that gave 50 ideas for improving one's life. Some ideas seemed logical and simple such as "Control Your Clutter" and "Balance your Books" and Get Your Zzz's." Other ideas such as "Just Say No" and "Heart Healthy Eating" are not as easy. Typical ideas can work successfully for people with disabilities also. We need not dwell on our differences, I think others do that and impose their unnecessary concerns on us. Just having fun and "showing up" is all it takes. There's no reason to hesitate doing that dance.

facebbook finally

Perspectives on disability will soon be available because I am creating a facebook page for Infobility. I decided to organize my booklets, add one on employment, and offer presentations to simplify hiring people with disabilities to the workplace. I think there is someone to collaborate with me also. Tomorrow night I am attending a spinal cord injury group in Ephrata so perhaps that will also lead to participants. The plan isn't perfect but it's time to put aside my fears and make this real. The topic needs to be addressed and there is no better time than the present. Actually I have been trying little by little. I will build the plane flying then see where I land.

Unique ideas

I attended a grant meeting on an RFP entitled "Employer Centered Employment." I have been mentioning my idea about putting the employer, who is the decision maker, the center rather than the consumer. People looked at me like I had two heads. That is the opposite of the way it is done. Well, it has not worked very well so why are we continuing to do it this way? I learned that the Disabilities Council had the grant 13 years ago but there were no better ways offered from the grantees and therefore, this was all cancelled. This time 1 question was asked about paying the consumer to work with grant money. 1 question was asked if money from the state agency could be used for the grant (which requires matching funds). Does anyone actually "get it." Why should consumers be paid to be placed? That's the job of the employer once placed- it's called a paycheck. Money from the state agency if for the consumer's job needs why would it go to the staff for the grant? I offered to help a local agency but I think they may be intimidated because of all I have done for this project due to my interest. It's not a job to me.

Full Circle

I began my professional life implementing a disability awareness grant from Pennsylvania Developmental Disability Council and I'm going to end it implementing a grant from the Pennsylvania Disability Council. I say "end" because this project will happen no matter what and it will continue forever. It will be the king of project grantors like since they always seek projects that will share outcomes with other groups, be collaborative, and grow. As long as it receives some kind of support it will go on. At some point the program directors who underestimated my abilities and refused to alter their programs will notice that there is one that is successful and being done backwards. That was a main issue that no one understood when I explained the problem. They continued to have a consumer focus (that's not even how the world works) I proposed that it be employer focused. It will begin small and gain traction, eventually holding supportive groups like they have in Philadelphia for 17 + years.

Feeling welcome in community groups

It important to belong to community groups as a way to learn and raise awareness just by showing up. Sometimes the group is not receptive and it's best to just move on. I belonged to one such group that I did not feel comfortable with no matter what I did. I was welcomed and spoke twice- a member of a panel and a presentation. First was the talk "Strategies for hiring employees with disabilities." I developed a power point and spent 30-45 minutes talking on the benefits of hiring and workforce engagement. The beginning was an activity and the conclusion was for comments. The participants hardly said anything either time. Did I expect too much? The second was a panel on diversity. I recalled the experiences I had as a placement specialist and job coach. The moderator made something sound funny that wasn't. It was not appropriate and I felt really uncomfortable. Then the diversity group I was excited about had meetings without me. They would send the summary after the gathering or cancel but not inform me. I realized that after a year I was not going to make any more inroads so I decided to seek a different group.

Musical Messages

There are so many country artists who sing of adversity, moving forward, staying strong, etc. However, when it happens to them they play a different tune. Carrie Underwood had a bad fall outside of her house. She told the world that she broke her wrist. A month or so later she admits that her face needed stitches and she's not ready to face the world. All she has to do is look back on her own words in her songs for inspiration. Even Bethany Johnson, the movie she was in, will tell her that her life will go on in spite of this setback... perhaps I'm too hard on her. Lives of famous people can be ruined with accidents that alter appearance but country fans are usually very forgiving. Shania had problems with her vocal chords, Jo Dee Messina has cancer, I'm sure there are many more. I'm sure this too will pass. Everyone deserves time to process things.

Wheelchair advocacy

I just read a book called "The Best Year of Your Life" and I need to re-evaluate my skills and interests. I am spinning my wheels when it comes to educating employers so I will shift focus for awhile. I need to get some answers from the insurances, providers, and manufacturers regarding their lack of ethics. Who decides a wheelchair will not be covered by insurance and therefore will not be manufactured. Most importantly why is this a secret and why are consumers made to feel stupid that the chair received IS the one ordered when they know it's not? I don't think these questions are even considered let alone asked. If professionals are just going to continue as they will, and I suspect they will and get even more dishonest and even fewer types of wheelchairs will be available and even more consumer's concerns will be ignored. This time I will not be alone because I asked The Spinal Network, who I wrote an article for about this, to connect me with other intelligent consumers. This will not be a typical healthcare battle it will be an organized investigation and I'm sure it will take professionals by surprise.

grant$

Still trying to alert others of the ten proposal requests in hopes that someone will reach out. I'm not a non-profit entity so I can't submit anything. It kills me that there's money available just for the taking. Well, it really isn't that easy it is time consuming to complete a proposal. The concept is a good one- regardless of the specific topic all 10 projects have a collaboration component. The goal is to work together with another population and then be self-sustaining. That's not a popular idea but it will come to that in this field and many agencies are already sharing the load. Thinking ahead is crucial - it's a matter of survival.