Voices of Disability

Instead of just hearing about the problems the disability population has had and will continue to have I'm going to be part of the solution. When I heard these 2 facts I decided it was time to take some action so I'll no longer be at this location, please use www.voicesofdisability.blogspot.com

1) 113,000 people were cut from medical assistance in Pennsylvania. Why did this happen? It was because the government wanted to show they are clamping down on fraud. In reality, those cuts were made arbitrarily so they committed fraud. There was no case examination to detrmine that those people no longer required assistance.

2) 16,000 people are on waiting lists for some type of services. The list grows annually because every year 700 additional kids graduate from public schools only to sit home, watch television, and let their skills regress.

I'll be compiling stories of families and individuals who have experienced these types of situations. I will be developing a video of these people also. If you or someone you know wants to participate in this project please let me know. < is one place that you can write your story. You are also encouraged to contact me at 13suewheels@gmail.com

I was at an event called " Disability Networking " and I'm really quite inspired. We talked alot about how to strengthen our advocacy efforts and the movement as a whole. There was a move to combine our efforts and be more proactive in making things happen. I offered to compile stories from the thousands of people taken off medicaid to show how inequitable the system is. As far as taking what I learned back with me I'm not sure I can since my area is not likely to work together.

The project of helping parents of kids with special needs hit a snag, the lady moved. I attended a meeting in which the director from the Developemental Disability Planning Council spoke. The grant year is starting and his secretary brought a few booklets on the available grant projects for 2012. I chose a few, summarized them, and will present them to my boss. Hopefully he will be willing to consider me for this oproject, it would be found money. If he rejects them I can implement projects from the guidelines anyway. Furthermore, there are individual grants I can go for.

I met a lady who wants to start a business working as a resource for parents of kids with special needs. The best part is she's actually motivated to do this! Originally I was helping a friend who wanted to do this kind of thing on homeschooling but she kept saying she was overwhelmed. Well, I was overwhelmed listening to her say how overwhelmed she was with my ideas (we'll send her referrals). This project is going to include Infobility and Speial Ed - she has experience doing it. I can't wait to get rolling and she seems to be excited too.

Van problems again. Well, I didn't think so believe so I got the bumper fixed, I'm securely locked down to the floor,and there are no weird noises...well unless you count the non stop shrill buzz indicating the chair isn't secure. But it is. I even called Louisiana to ask if the buzz could be on for no reason (after all the parking brake light goes on but that doesn't mean the van is off). The serviceman explained how I could turn it off. I tried but it's disassembled cause Van Conversions knows I'm the only driver. So I did the inevitable an called Van Conversions. I think I bent one of the levers when getting into it in Ephrata.Still, it didn't make that sound till 2 days later. It also didn't make the sound after the rain storm when I backed it up. I'll have (my) Terry check it before I go to have (VC) Terry check it.

I've been so grateful that my van is fine after the heavy rains. Well, not so fast Sue. The lockdown seems to be working to secure my chair in place while I drive but the shrill sound that indicates I'm not reaally secure won't stop ringing. Is it a matter of turning of the buttton, adjusting a wire, or getting me an entirely new system? Am I really secure or does it just seem so? Has anyone else ever had that problem? I know if I call I'll be told to bring it down and pay $$$$$$. Withth dumb safety concerns for handicapped drivers I may be forced to once I have to get it recallibrated. Then they'll tell me they must send away for it and it can't leave the shop till it's installed! Oh how I wish I knew what to think! I know a guy who lives at Umbrella Works and used to install the eqipument. I may just seek him out.

I figured out how to do something independently and I'm proud of it. I have a big container filled with macaroni salad. It's round and heavy so I can't safely lift or or grasp it. I hate asking for help whenever I want to eat the contents inside. Now I won't have to because with the help of a plastic grocery store bag I'll be fine. I slip the bag a little under the container and tip it over into the bag. I hold the handles of the bag and can safely lift it out of the frige. WHen I'm done I'l do the same. I must always check that the lid is on tightly.

I'm soooooooooooo lucky. The town I'm in was blocked by huge pools of water. I went on 3 different exits and each time got to a road and had to turn around. However, while traveling on some of those roads I had to drive through some pretty big pools that were not blocked off. That was scary cause the box under my van which has the "brains" of the adaptive equipment got soaked repeatedly. It was extremely easy to short out and go nowhere. What would I have done then? I'm soooo lucky.

My Rabbi's wife is the director of a camp for kids with disabilities! I can't wait to get involved, they do things throughout the year. I am going to meet her to learn more and then hopefully I will be busy volunteering. I'm going to sign up for HUD housing, it culdn't hurt and I'd be in the city where thngs are. This would not come through for awhile anyway. I like Mt. Joy but eventually I'll be tired of living so far away. By thenI'll be very buisy with meetings at the synagogue and this way I won't have to go back and forth like I do now.

When it comes to safety I prefer to take preventative measures to ensure that a fall won't happen. Case in point- my shower bench is made to go over a bathtub not in a shower so it's too short. The easy answer is to buy a new one for $$. I opted to try a few diffferent ways til I figured out a pretty safe way. First, I used a very long transfer board. This was okay but securing it so it didn't move around while I was on it was hard and it would not move from under me once I was back in my own chair. Second, I tried a shorter but wider one which seemed good til I really had trouble securing it transfering back to my chair. Then I used it on the way up and "jumped" and prayed when transfering back into my chair. Then it fell as I was about to position it to get bak in my chair. There was no way could use it then. That was the best thing that could have happened. I decided to try to a very unconventional but logical idea. I looked at the big space I had to get over and realized that what I needed was something to fill it so there's no room to fall, the key to not falling is having no where to fall. My eyes scanned my kitchen and stopped when they spotted a garbage can. It was close to the right height so I took it, turned it over, and placed a big notebook over it. Now the space didn't exist and it was a perfectly straight transfer to the shower bench. I even put an old pillow case under my butt to ensure a smoother transfer. I haven't fallen yet and I don't plan to.

I went to a church acsross the street in town and found out that the kids program becomes an after school program once school begins. I spoke to an office worker and told her about my free disability programs. She said she was interested in would share the information with others. Once I do a program there I can do them at the other 43 chuches in this small town. I will also look into prsenting to students in the Disabilities Studies class in Millersville University. I will make progress.

I've been in Lancaster for 6 weeks. I'm meant to be here...in Mount Joy I mean. It's far away from the main town but I discovered the Janus School. I finally inquired and it's a K-12 school for kids with learning disabilities! Wow if I could work for them I'd be thrilled. I'm going to have an informational interview soon and get my resume on file. I'll volunteer for awhile and get another job. Hopefully my name will come up for something within the year that I'm here. If only I called sooner, school begins soon but that may be a good thing. I'm also looking into IU 13 which has a transition program and Friendship Community which has direct care openings and an enclave program.

I now have other options besides the Disabilty Empowerment Center, just in case or maybe rather than. I've done more for other populations (MR, MH, LD) than physical so maybe that is best. It's never a bad idea to have options.

Below are some of the programs offered through Infobility
Learn more by contacting Susan suewheels@gmail.com

Presentations for everyone.

This interactive program includes discussions and questions:
What is a disability? How can you improve society?
What are the effects of people’s negative attitudes?
Watch a video on disability and employment.

This program can be for: Students Youth groups, Boys/Girls Clubs
Small groups, support groups Scout troops/Brownies, churches

Presentations for businesses
This program discusses challenges and solutions in the workplace and includes a sensitivity exercise for those who would like to experience a disability for a day.

What are reasonable accommodations? Some examples.
Why hire people with disabilities? Tax incentives and statistics.
Some challenges in the workplace? Problems and solutions
The Americans with Disabilities Act and employment.
“Working on Wheels” A sensitivity exercise.

Programs for Individual & Family

This is an individualized program in which you may get help from us in your home or on the phone. It is geared for those who were recently diagnosed. We suggest… you decide.

We offer individuals- peer support, venting, connection to resources, tips for daily life. We will never answer your question rather we will provide you with options to consider. We offer families- a chance to vent and explain their perspectives. Everyone is accepted.

One of our tools is a pamphlet called “The Tenacity of Hope.” It is a booklet that includes thought- provoking questions on coping skills and ideas for daily life.
Inf bility: Sharing Information & Empowering People about Disability.
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Infobility has two goals:
1) Inform the community with programs for schools, businesses, and outreach.
2) Empower people with disabilities through coaching, to improve quality of life.

Sharing Information
• Guest speakers may present disability awareness programs for students.
• In-services may be presented for employers on architecture and attitudes.
• Projects implemented and resource tables at various community events.

Coaching and Literature:
• Vocational Venues- This is a discussion on employment skills including interviews, applications, cover letters, and resumes.

• Paths to Progress- These are individual discussions, via telephone or email, to assist you in evaluating your life and improving your coping skills.

• The Tenacity of Hope- This is a self-help booklet to help you assess your needs by posing a number of though provoking questions.


* As a person, who has a master’s degree and a physical disability, I am aware of the challenges in life and solutions available. I believe that support from someone “who’s been there” can be very valuable. Try my FREE programs.

• Schedule an awareness program in your company or school.
• Plan a sensitivity project in your community or small group.

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Infobility Presents: The Tenacity of Hope
Have you ever felt overwhelmed by your disability? Read this book.

It is a self-help booklet on coping with a disability.
It is a workbook to help you assess your special needs.
It poses simple questions so you can decide where to start.
It offers insights for managing some common daily problems.
It provides you with a tongue and cheek look into life’s challenges.
It offers a comprehensive overview into the following six issues below:
Physical -- Psychological -- Educational
Social -- Vocational -- Societal

This book will…
…help you to determine what your next steps may be.
…help you become more productive and independent.
…empower you in order to improve your quality of life.

Infobility is a program that informs and empowers people with disability related concerns or interests. It offers simple, practical ideas in “Path Toward Progress.”

As a person, with a master’s degree and a physical disability, I am aware of special challenges in daily life. I believe that support from someone “who’s been there” can be very valuable. Contact - Susan Schaffer 717-492-4010

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A Program for Young Adults

What is a “Disability”?

Have you ever had a disability?

What if you did have a disability?

Do you know a person with a disability?

How could you help a person with a disability?

Does someone in your school have a disability?

Do you ever talk to/or help the person in your school?

Are people ever mean or act weird around that person?

What are some things that would be hard with a disability?

What are things someone can still do even with a disability?

What are some things in life that help people with disabilities?

What are some you NOT to do around people with disabilities?

I can't sit around and wait for a job so I sent out letters to local churches and the
Elizabethtown library abou doing disability awareness programs. I called the CIL to ask about borrowing the video on etiquette. Also I'm attending my first Mt. Joy boro meeting. People will look at me cross eyed- "Disabed people don't come here!?" I'll meet people and get involved in more ways than 1. I sent a detailed manuscript on enclaves to ODC and the girl seemed grtaeful and UDS will interview me for Volunteer Coordinator. I'll get to meet many people with that. Eventually Disability Empowerment Center will come through for a part time job too. I'm fine.

"You get more bees with honey than vinegar." If I want my hometown to be more disability friendly I will educate people and become a member of the borough council. People will be more sensitized and I won't even have to say the word "accessibility." I certainly wouldn't threaten anyone with a lawsuit because that is not my way and it's not an effective way. It would only make enemies. One of the board members in the field of physical rehabilitation, I'm sure she's given it some thought.

Imoved to a quaint but mostly inaccessible town 12 miles from Lancaster. The irony of it all is that I chose to live here because the apartment is so accessible. Also I did not want to live in an elderly highrise however, my neighbor and only friend thus far is an elderly lady. I found this wonderful program that has people with disabilities who work in the community. I will visit the site soon and hopefully get involved with the agency. It's so weird not to be able to get in 75%of the stores in the town.

I've always wanted to produce a survivor type show in which non-disabled people use wheelchairs to ambulate for a week. It would be very easy to simulate that physical disability and it would be a very effective way for the people to understand what it is like. For the social aspect - go to a mall; for the vocational aspect do you job sedentary only) while sitting; for the community- wheel on a sidewalk seeking curb cuts (notice how many of them are too high or not even there; for psychological- have nightly discussions with the sample group and discuss people's stares and other reactions. This may just happen, I never thought it would!!

Who else would have $148.40 of damage for wanting to enter Arby's instead of going to my choice which was Kentucky Fried Chicken for a $2.50 meal with the coupon? The driveway looked fine but suddenly I hear a crash. I knew I hit bottom but didn't know exactly what I hit- until I tried to open my door. It went off the runner and we went to a local car dealer to fix it. Then 2 days later it does it again so I went to Van Conversions unable to get to the bathroom. My favorite service man replaced the part immediately and I drove home like nothing had happened.

I was all sent to live with another consumer from Lancaster. We met at the Indepen-dent Living Center and the Director had some places for us to call and visit. I went to one that was not right and had 2 hours before meeting up at the center. I decided to go to the place I knew about in Mount Joy. I went and just couldn't resist 1) the degree of accessibility 2)the landlord (we had become friends) 3)the quaint town. It was 13 miles but it's highway driving and it actually would take just as long if I was fighting stop and go traffic in the city. So I said "yes" and my 3rd new life begins next weekend.

Yesterday I went to the Kutztown Folk Festival and a lady who went saw me transfer in and out and in and out of the car into my manual wheelchair. She watched what I did and said a few times that she was amazed with me. She was not fake when she said it or when she talked to me. I felt really good about how she reacted. I don't think about that when I do it, I just do it and usually feel badly about how long I'm holding up the other people in the car. Mostly I'm listening to my Dad swear about having to wait and then I let my Mom lift me which is awful for both of us.

I have a chance to rent out an accessible house in a wonderful location. I can't fo it alone so the only way I can do this is to find another person. I know that there are other disabled people who want places but I also know they aren't willing to work together with anyone else. If only someone would take a chance, I hate to pass up this opportunity. This is so frustrating!

I was invited bythe owner of the accessible apartment in Mount Joy to visit the place and decide if it will work for me. I think I have a solution to deal with the distance, I will connect with someone who drives to Lancaster daily and share the cost of gas. Nobody has replied yet but I think there will be interest. The lease will only be for a year so by then I'll find something better. I had an offer of a handicapped apartment in Harrisburg and let it go. As a result I had a terrible time finding something.

Moving to Lancaster may not be as complex as I thought. I found 3 apartments that claim to be accessible and a house to rent. I will call them all tomorrow including the local Independent Living Center to ask around for another interested person but I think the house will be too big a deal. It may be something of interest in the future but accessible house don't come along everyday. All I care about is being invovlved with such a wonderful program- United Disability Services.

I must work in my field to be happy. I must stop thinking about it. I must start at the bottom. I must plan for it and figure things out along the way. So here goes... The best place to be that I know of is United Disability Services in Lancaster PA.
I sent them a resume and will volunteer there so they get to know me. I will live at the Sunnyview Motel which has an accessible room. I will expect nothing but to learn so that in the future I will become a part time employee.

Unlike Kentucky I expect it to only last 6 weeks. I want a paying job from Andrea but it may be best to start all over from scratch looking at an accessible place. I will not be living in limbo forever.

Someone called me and was very upset that a hotel had an accessible bathoom in one location but not in the other end of the lobby. I couldn't find a specific mandate on how many restrooms in the lobby must have an accesible stall. She had a point but I am grateful if there's one and I don't demand that a place have two. I also heard of people complaining that a ramp isn't good enough. While that may be true, I hate that because then the place won't have one at all. I often thank managers for ramps.

Should a person who uses a wheelchair be allowed to use a hotel restroom that is only for guests? I just had that situation earlier and I then called the company CEO about it. It is so rare that there are restrooms that I can use in the middle of neighborhoods that whenI find one I'm going to fight for it. The trouble is that the average person thinks I'm lying if I say I can't use other accessible one. I just sound picky not worried about breaking my leg and/or falling on the floor cause I can't get close enough or the toilet dipenser is in a bad spot. The result of this will be interesting,hopefully in a good way.

It's time to develop a website. I have more than enough to offer and a blog is not enough to interest people. Hopefully people who see my blog will email me about Infobility but I may have lost alot of people. I'm going to distribute my second newsletter later. My new idea for marketing is to help a lady who bakes gluten free items. I offered to share the product information with the autism community since flour is a dietary restriction for those people and they are limited in what they can eat. I'll also offer my "How Do I Spread My Wings?" book as an incentive to buy.

I never thought I'd admit this but one of the safety rules made for disabled drivers is adequate. My usual wheelchair is broken so I have anotyher one which doesn't have a bolt to lock me in my van while I drive. I drove yesterday and all was fine but I drove today and it was scary. I started to make a left turn and I slid a little bit. Thank goodness I was going slowly and thank goodness there were very few cars on the road. Nonetheless, I was pushed into my steering column very close. I also had to make a sudden stop and I slid a bit too. So I guess I'll be spending the $800 for a bolt to go under this chair.

Nothing disability related makes sense. My power chair isn't working so it follows that since I have no bolt on the bottom of this power chair I can't drive. I decided to just check the positioning of this char in my van. It was all perfect... or not since the lock-down wasn't able to work it screamed the whole trip but it was a very easy one. When I used my old power chair with the lock-down it was ten times less safe because the controls were six inches away. Try explaining and convining a normal person that the chair without the lock-doen is actually safer.

I can't believe my parents still don't get it. They still think accessibiity is more important then quality of life. Sure I must be able to navigate inside an apartment but there have been times when I made the situation work because I wanted a certain lifestyle. Life is not accessible, one makes it as best as possible because the alternative is waiting for the perfect situation and letting life pass. There may be more going on than I realize. Actually, they don't want me to be independent (they say they do but talk is cheap, and that infuriates me. "Any color I want as long as it's black." That's their real philosophy.

I finished my booklet on growing up sheltere. I hope it looks instructional not just an opportunity to vent about my childhood. It gives children of all ages a good opportunity to think about life and how to proceed. It gives parents some tips on how important it is to consider the whole person (beyond the disability). Now I have ten projects and programs to offer under "Infobility." It's going to have a website soon and then some real marketing. I'm on my way!

I finished 3/4 of the book. I wanted the first part to include what I wrote years ago in my manuscript. The section was called "Parentability." This included The School, The Family (Sibling Relationships), and The Future. I was really frustrated that I can no longer find the black 3 ring binder with the paper. Therefore, I will have to rewrite it all over again. Usually when something is written for the second time it is better. The second part is largely from "The tenacity of Hope" plus a few more chapters (Transportation, Housing, and Advocacy) that ended up being really long so I'm glad I just copied and pasted. Otherwise I would not have done something so extensive.

I have been looking for advice about overprotective parents. I have found nothing and when I bring the topic up to counselors or seek advice from them they just give me looks that say "I feel badly for you." Appearantly I have found a topic that really needs to be addressed. Who better than me to write about it? The first half of the information in the book will be for parents and it will be not matter what type of disability the child has it could be autsim or arthrogryposis. The second half of the information in the book will be for adult children of overprotective parents. The title will be, "How Do I Spread my Wings?"

I just took a vacation and stayed with the Super 8 Hotel. The beds were too high for me to transfer on so the staff took out the box spring and put the bedspread on top of it. The next day it rained hard when I came in. The staff went out with me to help me retrieve my belongings! It may be helpfull for people with physicaal challenges to know that when plannning a stay, take Super 8 all the way.

Finally I wrote the first newsletter, I guess I had to wait to be inspired. Well I am ready to do the next one already. I have to tell people directly that I will be glad to feature their services or program. I didn't make that clear but that is an important part of this project. I hope to increase sales for them as well as reach out to more people. Until I get a real following I will include interviews as part of the articles. That way new people will be sure to know about the newsletter.

Here's the outline for my free newsletter. The reason for my procrastination is that I wanted other people's input for the first issue but I'll get it after the first is dome. I want an article on one general topic; I want to share stories; I want to people to vent; I want to promote disability products; I'll conclude each issue with an explanation of "Infobility." Regardless of the content each section will have the same catchy title.

I gave Wheelchair Recyclers a list of seven foundations that may award them grants if they apply. I spent about ten hours and read about 100 summaries but it's a worthwhile project. I got a used wheelchair so now I could help an organization that does the same thing for others. Also they'll share Infobility I hope but the goal is to grow them and learn of new and innovative ways to do that.

I'm joining the Spina Bifida meetup in Flemington New Jersey. I can find motivated people who are interested in Infobility and I'll offer to sponsor an event. I also got the go ahead to apply for grants for WheelchairRecyclers. They will share my information and be a good reference eventually. Right now there's no need an ezine. I'm glad I didn't purchase a costly autoresponder. I'll help a group grow and in return they will help me grow. That will be my marketing strategy. Reciprocity!

I'm reading all sorts of marketing books and learning ideas to make my name known. I love getting involved in community things and my old physical therapist belongs to a huge church with tons of activities so I can do something with that. I have nice business cards so I should use them and sponsor an event that will be popular and get Infobility started. I think too much, I just have do decide on something and "just do it."

The best way to market Infobility and Wheelchair Recyclers is to place an ad in a reputable magazine like disAbled or Disaboom Online. I must find a "free prize" like Seth Goldin's book says before I spend any money. I thought my service would be the extra but I don't know if that's meaningful enough. I may ask Friends in Business for ideas. I will also need too do some research by asking people who visit the Disaboom website what is meaningful to them.

I just did alot of good work for the Wheelchair Recycler, it should really grow.
There's got to be a few foundations out of 28 that will be interested and request an application (or 14 as one of them states in their criteria). Drive Master should be willing to help financially. We don't need alot of money for the wheelchair pickup in New Jersey and it would be good publicity for them. Also gettting kids to become interns would be a wonderful way to expose teens to disability and spread the word. My goal is to open a branch in the Lehigh Valley. Mark can help with that,maybe Mike too.

I'm doing something that is really going to make a difference! Wheelchairrecyclers is already established but in need of help to grow. Since they don't have much money my work is real- what a staff person would do. Identifying grants, planning the pick-up and drop-off of chairs in New Jersey, arranging for schools to give high school students credits for volunteering there. I have to be careful not to get ahead of myself. I promised to do nothing without their approvals. I'm not showing them up because I'm doing things they identified as needing help and they're the mechanics. In time they'll share my "Infobility" flyers so in return they'll help me grow.

I'm seeking sponsorshop for a non-profit company that refurbishes wheelchairs then sells them at greatly reduced prices. They have almost nothing by way of finances but they have 8 professional business plans. I'm going to write to a big company I met at the Abilities Expo last week, and ask them for a sizable donation. They're in New Jersey so I could even give a personal presentation. This is more likely than gettting a grant.

Today is the speech about "the dangers on drunk driving" by my friend with the brain injury. The concept is good and it may really resonate with a few of the 900 high school kids who will be listening. It's too bad that the speaker is so difficult to work with. I though he wanted to share his story, I didn't realize it wa contingent on receiving funds for it. Unfortunately for him I'm not doing this again but surely he won't see it that way. He wants to try to convince me how importat getting money is. He's been raising money for this himself and he got paid for a few of his talks so he's doing fine. I never asked for any and I don't intend to do so.

I called the wheelchair recycler people who I met at the Expo. They sounded really grateful for my help and in great need of my help. It's perfect for me cause it's already a non-profit program, it's got a big consumer base, and they will share an Infobility flyer with alot of potentially interested people who I would have never met. I'm going to connect them with Rose of "Bounce" for some business counseling. They even have eight good business plans. I am now going to be a "Ross" but for wheelchairs in the Lehigh Valley.

I met with a lady from Community Exchange who has always been interested in starting some programs for people who have disabilities. She's had a non-profit before and she lives close so it's worth the wait for her. We'll finally get something good going in the lehigh Valley. Until then I will contact some of the people from the Abilities Expo and see if they're interested in my doing marketing for them. The products and services are needed for people with challenges and they will share my programs on "Infobility." Eventually they may help market me nut first I must help them.

The Abilities Expo was interesting. I really talked with a few of the exhibitors and I exchanged information with 40 of them. I just finished all of my follow-ups and I hope to receive some responses. Some of the products were interesting. One recycles wheelchairs and turns thmm into snow plows and can turn it into a lawn mower. I may do some additional marketing for some of the people- there's so much competition. I
know I helped i.d.e.a.l. Magazine cause they would never have had these contacts.

Tomorrow I go to the Expo and see if I can interest people this year. Rather than market my own program- Infobility,I will offer it in conjunction with i.d.e.a.l. Magazine. That way people will learn about the two businesses and they will have the opportunity to try my disability services (individual and groups programs) free.

Infobility is for people with disabilities.
Empowering them to make choices and connect with resources.
Encouraging them to vent to someone who has "been there."
Facilitating support groups that discuss coping strategies.

Infobility is for people without disabilities.
Educating students & others with disability awareness programs.
Educating employers regarding the various hiring incentives.
Offering sensitivity programs and resource tables at events.

I'm very excited about the Abilities Expo. Year after year I attend and people just "yes me to death" and nobody follows up with me- this year they will. I'm going to market i.d.e.a.l magazine and Infobility. The subscribers will get free valuable disability related information if they subscribe. I'll also leave everyone with a letter about my programs and I'll make them all free, now I have a strategy and it WILL work.

I went to my first Bethlehem City Council Meeting. I was asked to speak about Human Relations Commission from the perspective of disability. I did, then I heard a majority of people talk about gender discrimination. I am concerned that this commission will receive 100's of complaints about everything. Now that people will know about it everyone will be crying discrimination! It will just be about arbitration, which can be powerful, but we can only recomend legal council. There will be no teeth in this.

Facebook is the way to grow and reach people from all over- it's better than a trip to the Abilities Expo in New Jersey. Through the i.d.e.a.l. magazine I met a lady who is an administrator for a disability website and is in contact with people who are all over the globe and in need of help. I sent her my things asking her to share them with others. I'm also going to try to combine with Easton hospital to do a disability celebration of the Americans with Disabilities Act. I'd love to hear people's ideas.

I altered the outline for the support group and now I'm really comfortable with it. The key, in my experience, is to make the group interactive. If a general question is posed to everyone and then we go around the room to discuss it thorough each person's perspective, that works best. I know I wouldn't want to listen to one person talk about coping with disability. Everyone has their own views and strategies. I hope that at the end one person would be willing to join "Infobility." I also hope that Ken Silva will recommend my program to other groups. Physical therapists are the perfect people because they work with the disability I am really targeting.

I may be on the Bethlehem City Council eventually. I met one of the members, Karen Dolan, today and there's a new committee forming that will ensure that people are protected from discrimination in employment, housing, schools & public accommodations
I will get involved in advocacy on a higher level. This is what I've always wanted so it's time now to give the perspective of a person with a disability to those who seek it. I also won't be alone in my views because I will be part of a group.

A local high school called about us holding the drunk driving program at their school. This will be for a total of 900 kids most will be anticipating the prom and graduation parties. This is the perfect audience and it is exactly the location we want and we'll get media coverage for it too. Suddenly the speaker on the brain injury issues due to a drunk driving accident is nowhere to be found. He better respond soon, he used to write me four times a day, now I can't even find him. This will actually work.

If I want to regrow Infobility, unlike before I must have a real plan and a real mentor. I will ask Scott- a member of my synagogue, a member of the Independent Living Center, and a former psychologist. I'll meet with him on ideas and he may help me. Then I will contact and meet all physical therapists in local hospital and rehabilitation facilities after sending a letter and a flyer. Then I will ask my OVR counselor to share my stuff with others, I'd like to be a vendor, I would be great as a job coach and peer support specialist. It would be great to have an event along with another group such as Cancer Support. There are alot of things I never did.

I'm getting my new business cards and a few interesting flyers today. I may as well give this disability business a 3rd try. They say three is a charm so I'll find out if that's true. I'm going to contact physical therapists and support group leaders first. Then I'll have a good connection with someone (maybe the cancer society) who can either lead me in the right direction or tell me someone who will. No website necessary, just a good attitude and connecting with the right people. If Donny and Marie can bring back what they had, so can I.

I am writing my support group speech now. It shouldn't and won't be an actual lecture but rather a discussion of ways to assess our abilities. I also want to cover some common strategies for coping. It could lead to work with people outside of the hospital setting, that's ultimately what I want to do. I've never done what I actually want which is meeting people after they leave the health care facilities. I'll be going through my booklet and asking questions that are after each section. It is before my visit to the Abilities Expo so it will be a confidence booster.

I need a new tire and a new armrest on my motorized wheelchair. Since I haven't lived in Bethlehem in five years I'm new a "new patient" and must get a doctor's prescription of necessity. How stupid is that? Not any less stupid than one provider telling me to drop off my wheelchair. What? I'm going to crawl around town until the tire arrives. I'll just continue with the place in Harrisburg I am used to. They don't know I moved and hopefully won't question me about it.

Running a camp of Chinese teens will be a good experience for them. I know they see disabled people as not real because they mocked me when I did it 2 years ago and purposely made it harder for me. They ran to eat in a restaurant that I was not able to get inside due to a step at the entrance. This time I will hold a discussion on the issue on the first day and allow them/encourage them to ask questions. I will also get more support form this company. I have two interested people, one of them is well connected with youth programs in the area. It will be nothing like it was.

Today is the "big event" a Blood Drive in a local mall and I'm going to include my brochures. That's relevant cause the event is supposed to benefit Easter Seal and that's disability. My brochures are on my disability programs. I wonder if anyone will call me back. I will hand all 50 out to each person who comes to get their blood drawn. I may even capture their emails and phone numbers, that way I can do follow-up calls. I'm sure I'll find a few people who work in a disability related job or have disability in their families. I'll also point out that I can talk to employers about tax incentives. I always like meeting people so here's my chance.

A disability can make you more capable of dealing with stress and help you view a problem from different angle till you reach the solution. I was helping my student with her research paper. The task seemed overwhelming and very frustrating, it's a huge part of her grade. I took a few "steps" back and changed a few key points and now we have a very doable paper. Due to my unique perspective on life I am able to tackle seemingly challenging tasks and break them down to sizable parts.

I have a speech planned for a support group. The facilitator is a physical therapist at a local hospital. That's actually better than if it was a parent of a child with problems. This man will have connections to other physical and occupational professionals who may be interested in what I have to say and show. My booklet will be used for the purpose it was meant- to help individuals with disabilities assess their own functioning after a sudden impairment.

I'm determined to make use of my other wheelchair. Not only is it mine, so I may as well use it, but since it's bigger getting me in and out of it will make me stronger in the prosess. It's not an in-house chair cause it's too powerful, so I will ride it to the bus stop and take it from there. I have nothing better to do so I will attend the pancake breakfast for "Autism Speaks" at Applebees and the Chilli Cook-off downtown. I will be proud of myself because I will have more strength but not have to lift weights doing it, I just lift myself in and out of wheelchairs.

I'm concerned about the online disability magazine I'm involved with. The founder is a wonderful girl and she did all the hard parts of establishing the publication but she's too patient with her "staff." The people say they want this to thrive yet there are so many delays and problems that I think people will not renew their subscriptions. It has so much potential and people say they're interested but that is it. One of the subscriber's happens to have a huge position at Proctor and Gamble. I tried to tell the founder that there is huge potential there that must be cultivated. I would like to devote alot of time to it but instead it continues to flounder.

I wrote to support groups about doing presentations. The facilitator at Easton Hospital will be the leader of the Rotary Club. I was told they make great venues. My "new" motorized wheelchair is getting better. First of all I got the footplates raised so I'm not as afraid to lean over. Then I got a soft material to cover the sharp edge of the seat. Then I found an old, much lighter battery charger that seems to be compatible with the chair. I'm afraid I can ruin the chair if the battery charger is not the one it came with. This chair will save me so much money cause I can wheel over to the bus stop and through the streets of the Lehigh Valley for $1. I'm not getting a bolt for driving, that alone would cost $800.

I really want to run groups and work with individuals who have special needs. There are so many kids and young adults who are babysat over the summer. I have to figure out how I can reach them. Life skills programs to keep them from regressing over the months can be so meaningful. I just have to figure out the most effective way to reach them. There are doctors and therapists who meet with this population all the time. I just have to approach the right person not just put an ad in the paper.

It really doesn't matter exactly what kind of disability you have. Not only does everyone have to deal with strategies for coping but also many of the symptoms are the same for different disabilities! I spoke to someone who had a stroke and her memory is affected just like someone with a brain injury. I spoke with someone with cerebral palsy who lost their vision just like someone who had a stroke who I know.

The Flip Side

Driving is the most freeing experience but it's expensive, complex, and frustrating. I just had to get my van towed cause it made a strange noise and two different liquids were dripping from it. The process of getting it towed and taking it to the shop is a big deal cause I must explain how to drive it on the flatbed to someone who has never done it. I look on the flip side and say 1)At least I have another motorized chair to use and can put the usual one with the van so now I can drive it home. 2)It happened after at home so I have a good body shop and the money to pay for the repairs. 3)I can get rides to wherever I need to go (the NYC event I planned on attending will happen again).

moving forward

I think I finally got my family to start encouraging my sister, who has a brain injury, to start planning the future. I said something that they didn't like and it got them talking. My parents have been enabling her so much but now I've pointed it out about three times and they're sick of hearing about it. I was told to keep at it and maybe now it's finally sunk in. It's been a year-it's time.

The presentation went well but I will make alterations for the next programs I have for other support groups. The theme of this one is good, it unites people with disabilities because they realize that the differences due to the types of problems is not as big as you originally think. Furthermore, many people do have physical disabilities but they are not as pronounced. Last night I discovered that one person, with a brain injury, was in a wheelchair for awhile but he was able to walk again. He had alot of sensitivity to my situation. If I had given a regular speech I may not have known that.

Today is the first support group presentation- I hope of many. The people do not have physical disabilities so I couldn't use my usual writings. That forced me to think of how I could reach people, who have other issues, more effectively. I always talk about how I want to work with others, now I can. My presentations for disabled individuals will no longer be directed just toward the disability and will increase my chances of working with people afterwards. It will still be interactive because that is the best way to ensure people's interest. I will ask, "What is your most helpful coping skills? " and discuss what people say.

Another unexpected opportunity

A family friend has a son who teaches the special education class in the elementary school down the street. What an opportunity! I realize that he can't just promote me through the school but I'm sure he's got enough clout to connect me with others who can help and/or tell a few of his kid's parents about my desire to work with a few of them over the summer. Skills programs vs. babysitter- which is better? Now I don't have to pay to advertise, I'll already have someone to help.

If it's a passion it will be successful

Disability awareness is for the purpose of educating and connecting people who have disabilities, or those care about the issue. I really believe that even though money is crucial and it's expensive to drive all over to give presentations, I still can't emphasize the money aspect. Suddenly, a potentially huge venue just fell into my lap and all I did for it to happen was help someone. A local mall is holding a blood drive to benefit a local disability agency. I expect to be there to help but I just learned that I am welcome/encouraged to "advertise" my disability programs. Since 1 of my programs is all about coping and I have a masters degree, I am certain that I will end up with some counseling experiences afterwards.

Today I'm going to locate as many Lehigh Valley support groups as possible. I will send letters on the topic of "coping." At the conclusion of each program, I will offer to work with anyone individually and design strategies with them for coping. This idea is unique enought to succeed I just have to market it. I still believe that if you do something that is your passion, it will be successful- I'll see how true it is.

i.d.e.a.l. Magazine

I'm Marketing Manager and reporter of an online publication for young adults who have disabilities. It's great to meet the people involved who live all over the country. There is so much potential for this magazine because many people with disabilities don't take the initiative to initiate something like this. I am making connections all over and learning about all sorts of things.

Coping: The Universal Challenge

I always believed that regardless of your specific disability we all have common thread. I am giving a talk at a support group for people with brain injuries and I just finished a book written by a lady who was a doctor. Basically I have confirmed my point, the biggest challenge we ALL face (in addition to the prejudices of people)
is the challenge of coping. We must all find a way to accept the situation and move on, otherwise what is the point? That is what I will emphasize and I will do it with other suppoert groups as well.

I'm helping a magazine, geared to urban youths with disabilities, to get ad space. I really enjoyed writing the articles but other people were interested in doing that so I decided to focus on marketing. Regardless of how good something is if nobody sees it, it may as well not exist. It's important for people with disabilities to be connected to each other and supportive regardless of their type of disability. I will still write some articles, I promised to feature people who buy ad space, in the paper. It's also a great way to meet people.

Last night I went to a lecture by the author of 'When Bad things Happen to Good People." The Rabbi encouraged friends and family to "be there" for the person at their times of need. He said God has no authority over nature or science and people have free will to make decisions, therefore we should not blame God. It's all about how one copes with a tragedy (disability). A person has the free will to cope as (s)he chooses. The choice could be to accept it or not. But it is a choice and others should not be blamed for one's own life. This seems hard to grasp when one is treated differently due to a disability and one sees others enjoying life.

I just saw the movie "Soul Surfer" the movie about a surfer who was seriously maimed by a shark. Her arm had to be removed completely. In my opinion the movie went too quickly into the character,Bethany's, recovery process. However, it showed the importance of a good attitude and supportive friends & family. Often people are stuck in the initial "why me" stage and very slowly move beyond that. That does not have to be the case.

I am interested in starting a summer program for kids with speacial needs. What often happens is that kids sit home and watch television or go to get "babysat" and lose all of the skills they learned during the school year. There are also many others who graduate and remain on the extensive waiting list for a program. Those kids also lose their skills. It is crucial that they practice their skills rather than waste their time. I will contact the Learning Support Teacher at the vocational technical school and the High Scool to get my name out.

The "new and improved" Infobility

I realize that I have stopped writing in this blog for awhile. I relocated and am breathing new life into this program that I will never let die. I have met military who are connecting me with injured veterans; I have begun counseling people with challenges; and I have partnered with another person who can offer a different view of disability. His name is John and he has a hidden disability- a brain injury. Together we are contacting schools and youth groups to offer awareness programs. It will be better than ever.

Reaching Out To Others

Infobility will be advertised in a resource publication. Hopefully others, who could benefit from my help, will contact me to receive it. My origional desire was to do just that. I would not be duplicating what has already been done. I would promote existing programs but would offer something unique.

I would interview people with challenges to ask them what they need most. That would be a starting place rather than just thrusting my booklet, "Tenacity of Hope" onto people assuming that it would be helpful. I would interview people without disabilities and find out where their concerns are so I can be useful to them.

My New Life

Actually, it's not a new life. It's my old life I am revisiting. Actually it's my old surroundings that I left and swore that I'd never return. Sometimes if you want to go forward you must first go back, so here I am - back in Bethlehem.

How do I plan on moving forward? I'm determined to make my disability project happen.
How do I plan to do that? To create a simple website and share it with other people who have blogs, websites, and interests in the topic of disability awareness. I'll start by sharing it with the i.d.e.a.l. magazine I am working with. Those people will share it with others and so on and so on. I will start with thirteen sites and then take it from there.

I really want to hear other people's stories and learn from them.

I haven't added anything in awhile. I am now getting very involved with a magazine for people who have disabilities. This online publication is meant for teens who have challenges, there isn't much for that population. I get to meet and talk with people who have disabilities and responsible jobs. I look forward to working with the other editors and crew behind the scenes.