Posts Tagged ‘Ed Roberts’
Happy Birthday ADA
Representative Tony Coelho shares the reasons he introduced The Americans With Disabilities Act in Congress in the late 80s. Tony Coelho also is a strong supporter of Partners in Policymaking.
Tony Coelho had epilepsy and used his life experiences to make a difference for thousands of people with disabilities and their families, not only in the present, but in the future.
What Can I Do?
When I get discouraged and can’t solve basic day to day problems for Aaron, my son with autism, I try to look at the big picture.
ADA is only 22 years old. Think about it.
The US Constitution is over 200 years old and we still have lots of issues to resolve. 22 years is just infancy in the lifespan of the ADA civil rights legislation. So we have made progress, but there is still lots to do.
After my recent surgery I went to our local community center and joined the seniors swim hour. I was shocked to see that there was no railing going down into the pool. Since I was wobbly and certainly didn’t want to fall again, I needed a railing.
I watched the other seniors (many of whom were also wobbly) hold on a low wall and scoot as best they could to enter the water. I saw one gentleman almost fall.
Now, this was my first day in the community center. I went there to try and get healthy. Meet some new friends; distance myself from “disability world.”
I noticed the pool had a lift for people who needed it. The pool also had a large zero grade entrance where a person could just walk into the water without any steps. This insured no steps, but didn’t solve the problem for someone who needed a railing. They did have a three step entrance on the other side of the pool that had a railing.
Technically, this pool met ADA requirements.
But all the seniors using the pool climbed down off this low wall and were in danger of falling.
When I asked the head life guard about it, she just shook her head and said, “I agree it is a problem, but no one listens to me.” She suggested I could take my walker into the pool if I wanted, or she could hold my arm and assist me.
I looked at my walker and it was aluminum, but it had holes where you could adjust for height and the water would surely get in there. I could just picture my walker dripping water all through my house—so the walker in water solution wasn’t going to work.
I already felt self-conscious enough, new kid and all, so I really didn’t want a life-guard escorting me into the water.
We solved the problem by having one of the other seniors get into the pool and helping me with that first step. Then I was fine.
Fine, except I now had an 80 year old woman who weighed 100 pounds wet, helping me get into the pool. If either one of us had fallen, I would have squashed her like a waterbug. To say nothing to what this did to my self-esteem and confidence.
As I joined the flow of seniors exercising in the water current, I tried to ignore the whole thing and kept telling myself: “Boundaries Mary!” “Choose your battles.” “Can’t you be normal for once?”
I wanted to be “included” I wanted to belong. I didn’t want to start off causing trouble.
I almost had myself convinced until I had to get out of the pool–Then my advocacy voice started again.
I followed the other seniors out of the water as we all tried to maneuver the low wall and the big step.
And, then you know what happened. I pulled the ADA trump card.
ADA makes a Difference, but only if you use it.
I ask to see the ADA Compliance Officer to file a complaint. The Community Center Director immediately met with me and gave me an official form.
She sincerely said she didn’t know this was an issue and thought the pool met all the requirements. She said she would look into the issues I raised.
I asked if there was an alternative to filing an official complaint. She said they had a form for suggestions and concerns, so I gave her back the ADA complaint form and wrote a long description of the problem.
I figured, as long as I solved the problem, this saved her a lot of paperwork and bought me goodwill.
The Director took the issues seriously. She asked me, “What do you think will solve the problem?”
I suggested she talk with other seniors, the Life Guards, the OT and PT department which uses the pool for their clients (me included). I suggested she watch the arrival and departure of the seniors (basically an ecological assessment). I also suggested she look into the concept of Universal Design.
The Director did her job and I didn’t need to use ADA.
Wait, let me reword that. I used ADA (even if it was just the threat of a compliance violation and paperwork headache.)
The new accessible pool entrance designed by the lifeguards and PT department will be installed in August. Already they have put no-slip mats in the changing areas and installed automatic doors. I feel really good about this. My advocacy worked and made a difference.
When I got the Fall Community Center flyer, I noticed they have a new program to “include” kids in their day programs and camps. I had nothing to do with this, but someone did. Some advocate spoke up… now current and future children will have more opportunities for inclusion.
I’m reminded of the old UP WITH PEOPLE song: “Freedom isn’t Free.” You have to pay a price, you have to sacrifice for your liberty.
Can you make a difference, too?
As we celebrate the anniversary of ADA. We are standing on the shoulders of those who came before us. Thank you, Tony Coelho. Thank you Justin Dart, Bob Williams and Ed Roberts and the thousands of others who worked so hard to give us a chance at a better life and future.
There are many people who don’t think we need government laws. When ADA passed in 1990, I was only worried about my son Aaron. But today, I am the one using the walker and needing accommodations. Now, I also need ADA.
What can you do?
In the comments can you share your ideas? Is there some way you can make life more accessible either as a professional or as an advocate? Anything that has worked? Not worked?
All my best,
Anyone can be a Father, but only someone special can be a Dad. (anon.)
“Love is that condition in which the happiness of another person is essential to your own.” (Heinlein, Stranger in a Strange Land, 1961.)
What is a Father’s “unconditional love”?
Many people have trouble explaining “unconditional love” and “fathers.”
I remember one Hallmark commercial where an older dad said he really only understood a father’s love when he saw his son holding his new baby–his grandchild. We were fortunate to see our son, Tommy with his new daughter. That is one amazing moment and made our hearts burst with love and pride.
But when I think of my husband Tom, and the harder love, the real unconditional love, it is when he is with Aaron, our oldest son who has the label of autism, intellectual and developmental disabilities.
Love is in the details, not the traditional big events like a new grandchild. It is in the demanding-ordinary-daily-love Tom pours into making Aaron’s life “normal” and “special” at the same time. Doing things that have to be done, when you would rather do other things.
Here is today’s example:
Dad picked up Aaron at his house at 8:30 AM today. The caregivers are going to a family reunion, so we want to give them some additional time off. After checking on his meds, asking about his toileting, Dad talked to the caregivers about our recent visit to Aaron’s medical doctor. Tom tells the staff, “Yes, you have to get the prescription filled.” And “Yes, this is now Saturday and we went to the doctor on Monday. What’s the problem?”
Tom then brings Aaron home to our house, takes him to the bathroom, cuts his fingernails, throws in some laundry (I’m still recovering from my surgery) and after an hour takes Aaron to get a haircut, go to the grocery and treat Aaron to a hamburger. Mom gets to stay home and hang out on the computer.
Later today we plan on taking Aaron swimming, and then seeing Tommy and his family to celebrate Father’s Day. We’ll take Aaron back to his house about 8:30 pm.
Dad is hoping to catch some of the US Open Golf Tournament on TV, but he fits that in between Aaron’s care.
Sure, as we celebrate Father’s Day, we’ll give Dad a couple little presents. I’m sure our granddaughter will give him a big hug and card too. But the “Bagel Guillotine” slicer, some peanuts for the ballgame and a new golf shirt will never be enough thanks for all the love and devotion Dad gives to his sons–every day.
Happy Father’s Day Dad! We love you unconditionally too.
Amplify the positive outliers
This week Seth Godin wrote an interesting post about creating change. He suggests that the easiest way is to “Amplify the positive outliers.” In other words, we don’t waste our time “extinguishing bad behaviors” and instead find “positive deviants,” positive examples of what we are trying to do and then “give them a platform, a microphone and public praise.” Seth says by focusing on our success stories and celebrating our superstars we will change our culture and strengthen our tribe.
In our Climbing Every Mountain community and other tribes of “inclusion” and “normalization,” we face daily examples of people promoting and building segregated schools for children with autism, segregated adult day (wasting) programs, even a new segregated “handicap only” baseball field. These are downright depressing and steal our energy and spirit.
So let’s begin thinking of positive examples and naming our “positive deviants.” In fact, most of the advocates and parents I know would like to be called a “positive deviant”—Yep, fits our label system just fine? Maybe we should be pushing the psychologists to adding that to the DSM, might make better reading than saying parents are still stuck in the grief cycle, eh?
Inspirational Video of people who changed the world
Enjoy this one minute of thinking about “The Crazy Ones” who helped change the world. If I was making a video, I would start with the above picture of my husband Tom and Aaron, the kid with all the labels–including “son.”
Some of the other Superstars in our life who would be in my video are: Annie Bauer, Michael Valdini, Dennis Burger, Colleen Wieck, Lou Brown, Anne Donnellan, Ed Roberts, Bob Perske, Tommy and Ana Ulrich, Mary Ann Roncker, Debbie Wetzel, Patty McMahon, Madeline Will, Patty McGill Smith, Patti Hackett, Leanne Bowling, Alison Ford and many others.
Join in the Fun
This post is dedicated to all the Superstar Dads out there who are changing the world.
In the comments, tell us: If you made a video of your “positive deviants” who would be your superstars? Not just dads, but parents, teachers, professionals, self-advocates who you think have changed our world? Who are the people who have moved us from segregation and given us the dream of an inclusive life with our families and terrific dads?
Keep Climbing: Onward and Upward
All my best,
“Partner in Policymaking graduates are members of the Giraffe Society–they are willing to stick their necks out.” Ed Roberts
Partners in Policymaking Celebrates 25 Years: 1987-2012
It is popular to complain, “We need to get rid of government programs–they don’t work.” But if you are a parent or person with a disability, you know you can’t do it alone. You know you need help to survive.
And, maybe the question we need to ask is: “How can I get involved and make government programs work better…for myself and others?”
If you are struggling to find services and build a network of support for yourself or your young child, I highly recommend Partners in Policymaking. It is the best resource I know.
Partners in Policymaking is a program that not only works–it teaches parents, self-advocates and policymakers HOW to make government programs work.
In 1987, Dr. Colleen Wieck of the Minnesota Governor’s Developmental Disabilities Planning Council created Partners in Policymaking.
For 25 years the goal is still to create a win-win partnership between people who need and use services and the people who make public policy.
With 21,000 Partners in Policymaking graduates in the United States, and 2,000 Partners graduates internationally, parents, self-advocates and policymakers are changing the world.
Partners is designed for adults with disabilities and families of young children, but some programs expand that target group.
The goal of Partners is to teach “best practices” and the skills necessary to “change systems.”
State-of-the-art information gives Partners the big picture, allows them to dream big, and gives them strategies to turn their dreams into reality.
Partners participants become competent to change their own lives, and then to work for changes that will affect others with disabilities at local, state, and national levels. Partners graduates are expected to be agents of long term change. They learn there are no “quick fixes.” They are trained to achieve long term successes.
Who are the “Policymakers”?
Policymakers are the people in government who are elected or appointed to make decisions about rules, regulations and resources. They legislate on school boards, city councils, county and state agencies and governments, federal congressional legislators, and others who shape disability issues at all levels of government.
Some Partners graduates have become elected and appointed public officials.
Partners in Policymaking is the Instruction Book
How many times have you heard parents wish, “If only I had an instruction book”?
Partners in Policymaking IS the instruction Book.
Here is a video that explains the facts about the Partner’s Program from the United Kingdom.
Texas, 20 Years of Partners in Policymaking (2006) “It is the Power of the Dream that brings us here.” (You will love this song.)
New Classes Forming Now: The Power of the Dream
Find the Partners contact person for your state/country.
Find out the target audience for the Partners Course and if you are eligible–sign up.
If you are not eligible, see if you can still be part of the Partners network.
Everyone can take the online courses.
Here is the Homepage for the Partners in Policymaking Website. You can find contact information for where you live, you can find online courses, you can find Parallels in Time: A History of People with Disabilities and a wealth of other resources. But most importantly, you will be able to network with others who are sharing your journey.
Any success stories about Partners? Any success stories about partnerships between advocacy groups and local leaders? Does this sound like a good idea? Who would you suggest for speakers on state-of-the-art? Do you think the power of the dream can bring people together?
Keep Climbing: Onward and Upward
All my best,
Crossing the “yet”
Ed Roberts was an amazing guy. We were both on the TASH board and I got to spend some time with he and his son (pictured). Click on his name and see his incredible accomplishments. Ed was into action, not words. He was asked to be one of President George Bush’s “1000 points of light,” which he declined calling it Bush’s “1000 points of hype.” When he died, his wheelchair was donated to the Smithsonian. One of Ed’s quotes was:
There are only two kinds of people in the world: the disabled, and the yet-to-be-disabled.
This past year, my husband has had some heart issues and I’ve struggled with sciatica. Because my back pain’s not going away (even though I’ve had the lumbar shots, physical therapy…) we decided we needed to move to a ranch house.
And true to Ed Roberts’ prediction, I have crossed over the “yet” and am now starting to see the world from the “disabled” point of view.
Of course I’ve always seen what worked and didn’t work for Aaron, my son with a severe disability. But even with that knowledge and experience, now it is more personal. It is me. And it is shocking.
Boomers and Housing “thought leaders”
First of all, the housing market is filled with two stories; split, tri and quad levels but few ranches. The ranches that are available were built in the 60s. So they have old plumbing, bathrooms the size of postage stamps, and some even have steps. Yep, steps to get to the one-floor plan.
As we boomers age there is a scarcity of accessible housing. Sure there are some new patio homes but they are pricey and often in “mature” neighborhoods. Sure there are condos and apartments with elevators in crowded senior high-rises. Sure there are retirement communities which are basically segregated facilities–beautiful, but still segregated. Isn’t that what we have been fighting against for the last 30 years?
So, what to do?
Next week my husband and I are putting our multi-level condo up for sale. We figure in this market, it is wise to sell first and then buy. But as we go through potential houses, we are not finding anything appropriate. Where is the diversity? Where are the neighborhoods where ranches are mixed with multi-level houses? Where are the neighborhoods where seniors and young families can live together?
Universal Design has been around for a long time, where are the houses built with this concept? Why have the builders not used state-of-the-art thinking and technology?
I wish Ed were still here to make a joke and put things in perspective. I wish Ed were here to share his wisdom and spirit. Fact is, I just plain wish Ed were here.
And once again, I am reminded of my own aging and mortality. And that is another shock.
I never used to have friends who were dead.
In some ways I am lucky, I don’t carry many of the fears and superstitions of the previous generationI know about the difference between having a disability and a handicap (see post). I know how to advocate for my needs.
As I think about my own passage into the world of disability, I feel more prepared. People with severe disabilities have led the way. They have taught us to strip away all the frills and find the core of what we need. They have helped us learn about interdependence, adaptations and accommodations, systems of support, circles of friends, partial participation and community involvement.
They have taught us what is important–to be surrounded with people who love and care about us.
So, Tom and I will figure it all out. We will use the advocacy and problem-solving skills Aaron and others have taught us.
I remember when one of our relatives had a stroke. He would complain verbally and non-verbally, “I’ve only been like this for a short time” (I used to be independent and able to walk.) He would explain to everyone who would listen, “I didn’t use to be handicapped. I was an engineer.” (I had worth.) “Aaron is too close he might step on my foot.” (I’m damaged now, but I’m not like him, once I was whole.) He did not want to be near Aaron. He never put his prejudices into an actual discussion, he just always had this attitude about people with disabilities–and by god, he wasn’t one of “them.”
We have worked so hard to change people’s attitudes about people with disabilities. The next generation of children has had personal experiences with people with disabilities in the schools and community. But maybe the bigger lesson is that learning to be more tolerant about others, will make it easier for us to be more tolerant of ourselves. Hopefully, part of our learning about differences will ease the process of getting older.
We are all the same on the inside. We all need to be loved, safe, happy and give to others. That doesn’t depend on what our outer body looks like. That doesn’t depend on what side of the “yet” we are on.
I think these lessons will serve me well.
ps. Anyone looking for a great condo?
Please share your thoughts in the comments.
Are you offended with Ed’s quote, “There are only two kinds of people in the world: the disabled and the yet-to-be-disabled.” Do you think this discussion will help us as we age?
Keep Climbing–Onward and Upward