I volunteered to volunteer at a shelter at the YWCA building. I went and when I got there I could not get through the front door. The door was locked and no one new which key it was. I was in the freezing cold for 20 minutes and was ready to go home. The reason I'm upset about it is I could have taken care of the issue on my own if I had known ahead of time. I'm not new to the problem of a locked door. I wish people who want me to be included admit that I should be the one to check on accessibility of a project because it's a special issue. It a weird dichotomy because people mean well by involving me but don't admit that I should be the one to make specific preparations. How do I get that across to others without hurting them? People need to feel more comfortable admitting potential problems.

I should be getting my new van next week. It's actually never been done so quickly in my life! The company is in Norristown and they are really committed to doing a good job. I have to use a larger wheel so it will take some getting used to so I am going there today to practice. It will be hard to leave it since I know it's ready for me and yet I'm not allowed to drive till I'm officially signed off by the York OVR counselor. Furthermore, the one I have been using has stopped working. I was able to drive short distances for awhile even though there were gear shifting problems. Yesterday I went outside to drive it and the gear would not get in any gear other than park. Actually that's the most important gear.

I have decided to take my knowledge, my experiences, my writings, and my interests and do Infobility differently. I will offer to consult on existing projects via email because I can be helpful to
companies. I have already started to market Ride Away and that realizes my dream of empowering people with disabilities to improve the quality of their lives. I will be contacting 50 rehabs and 7 CILs
I will not only make them aware of a great company but I can also walk them through the entire OVR process. I wish I had someone to provide support to me each of the 4 times I went through it.

I'm involved in a disability initiative with Millersville University. I also took part in a conference on disability and religion. The issue is really starting to gain momentum it's like a "hot topic" these days. It's so exciting to see people interested just because they want to learn. There is so much to be done and it isn't just with employment. I am getting in on the ground floor. Dauphin County is even going
to start a county wide initiative in which I may get paid to present awareness programs, analyze jobs,
and create clubhouses for this population. I am coming alive!

My first love, regardless of how many other types of jobs I perform that have nothing to do with this, is the following. 1) Creating educational programs on disability for employers, schools, small groups, etc. 2) Creating jobs for individuals with developmental disabilities. A person can not change the essence of his/her being. Those 2 goals may soon be realized - that would be like making Infobility into a business. It should have been years ago but better late than never. There are no words for how fulfilled that would make me feel. I have never ever given up on that reality because I just couldn't.

New outreach initiatives are being tried and in time they will show results. I'm going to be sending 53 monthly newsletters on a variety of disability topics. I met people at the Lancaster Expo, sent out my first issue, then followed it up and received some positive responses. A program is planned for the 25th and the attendees will be 13 new people. Perhaps this audience will be more receptive. Rather than giving up I'm trying different ways.  

This will be the last Next Steps meeting on general issues such as resources in the community. I am now going to focus on something nobody likes to think about let alone talk about. Future residential issues for individuals with developmental disabilities. There are so few options and so few people who are willing to entertain the issue, that I will just work with the ones who do and hope that others will follow. This is an even less interesting topic but I will make it worthwhile because it is.

I just spent 2 days at the Lancaster Disability Expo and I really enjoyed both of my experiences.
I may have some job prospects, I may have developed some friendships, and I am going to start a
newsletter again with all of the vendor cards I received. My logic is that each of the recipients will have a multitude of their own contacts and most will share this with them. I also learned that I could create a free Infobility website on blogger not just this journal. I would like to help arrange some of the transportation for next year so attendance can improve.

ADA Day seems as though it will work out nicely. I've done these programs so many times with no results but this one should be very different. It's at a good location, it's being supported by the Camp Hill CIL, and I am having big name speakers. Also I have done so many things wrong that the only thing I haven't done is do it right! I'm trying to incorporate residents from the community by asking them to tell us their stories of discrimination. That should interest them and encourage them to work with me on developing strategies to succeed in the marketplace. I'd love to have a follow up activity. 

trying to help

I want to apologize for my latest entry (I will delete it) I organized a vocational program for parents of adult kids with challenges. I thought I was very informative and wanted to give other parents and kids the opportunity to experience it. I mentioned that many parents are skeptical of agencies being less than helpful to consumers who have higher functioning. I see how that can be taken in an offensive manner but I was not generalizing that to everyone. These programs are not for myself though I can identify with the struggles. The purpose is to fill a need that is out there for some.

It is understandable that I have an overprotective mother; however, enough is enough, how does she think I manage the years that I didn't live with her? It's actually quite demeaning to experience her running after me with a rain poncho and much much more. It's unhealthy for me as well as for her and it will result in my sister, who has a brain injury, being completely lost in life after mom dies. A parent's most important job is to give their kids the tools and then teach them how to use them. I am actually proud of my fierce independence.

I have my 3 summer programs for "Next Steps" gatherings as well as an additional program to comemorate the 23rd annivesary of the Americans with Disabilities Act. I took people who were not participants of the panel last week but had good information to offer and asked if they would speak. I even got someone who wasn't given approval to attend, to speak. Hopefully the person will mention the gallery that displays consumer's art work. I may finally get some validitity for my projects.

I'm about to write notes to all of the participants who took the time to attend and share their struggles. I hope they will keep with it throughout the summer. I plan to develop 2 projects we discussed but I hope people will feel comfortable enough to offer ther own ideas. I believe that supportIVE groups are best so we do more than vent rather have something concrete to show for our time. I want us to be taking the next steps.

The meeting went well, there were 40 parents in attendance. People were concerned about their kids "falling through the cracks." Too high functioning for services but not high enough to function independently. I suggested 2 projects- compiling a manuscript of stories to show legislators and forming a bartering group like communty exchange. I think people would be receptive and I don't want to lose momentum. I would like meet 3rd Wednesdays of the month in the Manheim Library.
The next 3 groups could be in a house or park or restaurant or church. I just want to keep this moving.

I have been super busy fighting OVR with both barrels, the director just won't give up. First she tried to forbid me to schedule and pay for my own evaluation now she's requesting that I give her carte blanch into my personal background (social secrity numbers, bank account, etc)! She lost round 1 since I proved that a consumer can do an evaluation, it saves them money and I don't have to deal with OVR so they should be fine with that. Now I was told I must sign a release of information form. She decided that if I can afford to pay for the evaluation $100+ I should be able to pay for the purchase and installation of the hand controls $70,000. I wanted to prove my advocacy skills to help people with disabilities and now I'm given the opportunity to do just that- I am the example.

The article on my disability program has been published in a county wide newspaper and I'm getting a few replies. I've also filled 25 slots with 2-3 people each so I will have a huge list of prospects for Rose when she comes back. Hopefully we can then move forward with the hiring of me. I wrote a letter plus 2 full pages of all I've done since April 1 when I was denied the job at Hoffman Care. I wrote to my senator, a lawyer in my temple, and the lady I met at the soap opera luncheon. She helps people who have diability issues. There's got to be someone out ther who has the power to help.

"Round Two" with OVR and the van process. I have an appropriate job now and so I'll be eligible for my evaluation. I did most of the work on my own- I explained to the evaluator the equipment I need, I explained to him I've been driving for 20 years (OVR never told him), and he told me that he is in this area often (OVR never told me that) and will meet me 1/2 way if that works for him. This information would have taken weeks to research and compile. Furthermore, they would have charged for a full evaluation when I only need 1/2 of one. Next, I'm hiring my neighbor as a professional, private negotiator. She's perfect cause she'll speak calmly but firmly. No consumer ever does that!

Last night the educational program at my Temple was about the "Book of Job." We touched on our levels of faith in God during hard times. The trip to Mississippi, in which people still devistated by Hurricane Katrna, was used as an illustration. These poor people showed pride in themselves despite how bad their situations were.  The consensus was that people always have that little spark inside regardless of how they look on the outside. In my experience it isn't always so. Not only do people not get the chance to show their spark, they often don't know what their spark is.  Paid staff are so overworked and underpaid (even parents) they don't see the specialness in the people they see every day. The problems are easily visible so that is what is focused of rather than the other parts. If the good was nurtured, the bad would decrease on its own.

The disability program is growing and some key professionals are "signing on" to the idea and are "on board" with my concept. I attended the Dramability event because the director is participating in mine. I met a few good people- parents with kids who are in the program. The task force is sharing it with others and the newspaper article hasn't been published yet. I feel like I'm on my way and for the very first time in my life I feel like I'm going to make a difference in the world. 

My disability program "Next Steps" is full steam ahead. I was interviewed and the reporter asked to speak with the participants also. It may or may not result in a job but surely will widen my contacts. I did mention my needs to the reporter, hopefuly if mentioned it will be in a tactfiul manner. I would certainly not say anything during the program. I do think that I will benefit regardlesss because I believe that if you do a good thing for others it will come back to you. I may even get the oppportunity to start a Community Exchange program, as I've been wanting to do for months.

I have decided to present something at the library on creating a clubhouse type program for people who have developmental disabilities, and graduated from school. Optionbs that exist are volunteering in the community, sheltered workshops, supported employment, and day programs. There has to be something more meaningful and fun than what exists. I want to offer my ideas to parents and see what kind of feedback I receive. 

There is a chance I'll be working in a field and setting that I haven't before- marketing "Give Back Night" for Chili's. I really like marketing and I like helping people save money even more than marketing so I think I'd thrive. Marketing is one of the managerial duties but hopefully they'll see that if I can make them more than they usually get reaching out to non-profits then they'll be okay with it. I don't think the interviewer would be threatened by me. I've had enough of the opposite experience.

Time to implement my advocacy skills again. I don't just talk about them I walk the walk (even if I use a wheelchair). When a person feels as though something isn't right and change can and should be made, there is only 1 option. What's key is are calmness, smartness, and firmness because yelling, talking a blue streak, and showing fear are not going to result in success just alienating the people you want to change. Often I find that people underestimate me and that could work to my advantage or not, depending on the isssue. Here goes... 

My van door is fine now. All it was was part of the door off the runner. I was making all sorts of arrangements about this issue so I could still go everywhere I planned. No panicking involved just quickly moving into Plan B mode. I'm also going to make appoinments with the van vandors cause I will have to expect to make Plan B work there too. My first choice is Van Conversions in Allentown but OVR will not go for $125 an hour in labor so I will not just hope it works out. There's no indication that they'd negotiate to get my job. Go figure!

I wheeled over the corner of my DVD while it was inside the jacket. The disc is fine but there is a chunk off the bottom of the plastic. I wrote a note and hopefully it will all be fine and I won't get a fine. Then I drove the 2 books and 1 dvd back to the library where I proceeded to open the van door to ask a guy to take them inside and I broke the door! All other times I do things my self- insist on it but today I didn't. WHY? The door is still on the runner but it won't open enough for the lift to go down. Each time the door has to be moved a tiny bit by someone on the outside. Maybe if I fix the problem from the other side and bend the lift...

I attended a meeting like no other- it was sponsored by OVR no less. It was a forum about how they should spend their money during the upcoming year. I enterend the room, saw what looked like one consumer, picked up a few papers, including a 70 page packet filed with statistics and numbers, and thought "oh boy" I'll try hard to be patient for a little while. Well it turned out to be a really spirited discussion of people's ideas and comments to improve services for the upcoming year. The directors there were really interested in receiving feedback and discussing their many programs- some of which I never knew about. A major concern was letting more people know that OVR existed.

My endless OVR frsutrations continue. Not only are the jobs for which I apply not acceptable, they wont' give me a straight answer whether they even have the money to finance a set of hand controls. I realize now that part of there ongoing guideliness are partly just a procrastination tactic. Then trying to convince my parents that this is in vain is really wasted energy because they don't even understand the process when it does work. Now that it is VERY unlikely it will work at all is just beyond their comprehension. I'm done trying to explain it so I gave them a long lis of numbers to call to prove me wrong and basically tld them to have a blast.

Sometimes in order to move forward you must A) go backwards B) admit to and accept help. I was a vocaional counselor for most of my adult professional life. Why would I need help finding a job? Why can't I work with people who have disabilities? I have had one all of my life so I know what I'm doing. Well, that only worked when I was working... and I haven't been (appropriately) in over a year. It's time to face that fact and not continue to crawl while time speeds ahead. I must adopt a new attitude and with that aI have a new email. As the saying goes. "The only constant in life is change." 

It seems that I can't get a vendor to do minimal maintenance on my van. They all insist on removing the controls, sending them back to the company for evaluation and then reinstalling them on my van. This is about $6000 for the entire job and will take at least 2 weeks.  If something was wrong with the controls I'd know it and they all know it too. The company in Maine will not be able to fix anything, since they now have a new version of controls so what's the point! I started to complain in writing but I realized that #1 everything is working; and #2 my ordering new controls has been approved once I get the right job; #3 people with disabilities have worse problems than I do.

I had a very good experience with the Office of Vocational Rehabilitation and I want people to know. Very often I am spoken to in a condescending manner cause I am a client and they (the staff) are in control. This time I had a meeting in which the counselor was primarily concerned with getting me a job so that I will qualify for a new set of hand controls for a new van. It is true that I was in a better frame of mind than usual but also I know the difference between being spoken to with respect and disrespect. Doesn't everyone?

I just spent the morning at a conference on the topic "disability and the arts." Then I have the opportunity to experience disability discrimination from a human resource professional at an agency for disabled! It never stops. The good news is I did some advocacy by re-explaining myself and the she changed her incorrect assumption. Wow. The people who need to be reached will not make the time to learn so we're preaching to the already converted. That's a waste of time.

One can't have a disability and not be a self- advocate, there's just sooooo much unjustice and people have no problem treating you condescendingly. I've been doing this forever and I think nothing of it. It offends people because it come off too strongly and looks like I am a very nasty person. However, if given the option most professionals will take the easy way out and do the least possible job as slowly as possible. My problem is finding the balance because I often seem to have just 1 gear. It makes me undesirable to other people especially those with disabilites cause they're used to being treated poorly and staff is used to "the compiant client." It is worth it though because you are more likely to be respected but it's hard when you know more than the decision makers and they know that you know.

I just attended a really good conference on "Integration" at Millersville University. The speakers said everything that is not normally said. For example: 1) The agencies can't be effective advocates since it's the government regulations that are the problem yet they receive their paychecks from the government. 2) Disability issues do not get anywhere since the people have no power and the politicians only listen to those constituents who have money too get them re-elected. 3) Things are not likely to improve. I hope to continue the momentum and meet with some of the nondisabled in the audience.

I have been marketing a local shop in Mt. Joy to Innkeeppers  throughout Lancaster County. Most Inns are big beautiful buildings with loads of steps. However, I found one which not only had a ramp to get in but an elevator inside! I was so excited about it I offered to share this information with other disability tourist websites. I hope I help a few tourists to make a decision to stay at this inn, it is called "The Hurst House" and it is located in Ephrata, just outside of downtown Lacaster.

My indirect angle for getting Infobility noticed may actually work best. I am marketing for local stores and since people like when business owners donate to charity I am including my program as the charity recognized. At the end of the business book I show people my programs and then it becomes more real. It also begins a whole other conversation that would ot happen normally. I expect that a few people will discuss their experiences with disability. Most people know someone who has challenges.

I have decided to throw caution to the wind and attend the Country Music Festival in Nashville. I called Days Inn which was one of the hotels with the package for fans, and the manager agreed to take off the top mattress so I could transfer easier (no one agrees to do that)! That was so unexpected so I had to go.  I was still concerned about transportation so I called the CIL and wrote two notes online- Craigslist and Community Exchange. I received 2 replies so far but I found out 1 of my 2 transportation concerns is solved. There is a shuttle bus with a lift that goes to all of the venues and hotels. Now I need tio get a kift (kliterally) to and from the airport. That's actually the easiest problem to solve. First, the plane rides are during the week and second, the public buses are accessible.

The disabled system is illogical and I just may have to fight to make it logical. My van is a 2000 and my equipment (hand controls, steering nob, zero- effort power steering, etc) is now obsolete. When a person gets a van they must agree to routine maintenance. The manufacturer will not let me get my van checked unless I agree to all new equipment. However, the Office of Vocational Rehabilitation that pays for the equipment and installation will not pay for this until 2014. They just told me not to get the maintenance again (totally irresponsible) and if a piece of equipment quits they'll pay for it to be installed in the 2000 van. Then in 2014, when the rules allow, I will have to get this new piece of equipment re-installed into my new van. WHAT? This agency which has no money is going to pay twice for the same piece of equipment? It's more likely that they just don't want to have to deal with it.

I read "Chicken Soup for the Sports Fan." It's a compilation of stories from different people on one theme- althletics. One of the stories was about a high school mentoring program in which a football player is paired with a student who had an intellectual disability. After some of the usual resistance at the onset, the two boys forged a strong bond and it changed both of their lives.

I read under the "Contributors" section of the book that the author of the story had, at one point in his life, went through a physical paralysis and went on to become a worldwide insirational speaker. I asked if he'd offer me some suggestions to grow my Infobility and now I'm interested in his ideas.