Posts Tagged ‘parents of kids with disabilities’
Robert and Martha Perske
Today we heard the sad news that Bob Perske died. He was an advocate who made a difference. I will miss him.
At one of my first TASH (then The Association for Persons with Severe Handicaps) conferences, I heard Bob Perske speak about Hope for the Families. His book, by the same name, helped me make sense of our family’s new life as parents of a son with the labels of intellectual disabilities, autism and more.
Bob Perske has been one of the pioneers for people with disabilities and their families. In Parallels of Time Bob Perske is seen pictured with giants in our field. He has written many terrific books including Circles of Friends and Unequal Justice, his current work with people with intellectual disabilities caught in the criminal justice system.
Bob is an amazing minister, speaker, writer and just great person. People with disabilities and their families are fortunate to have him in our lives. Martha, his wife, uses her talent to create pictures which spread joy and a vision of inclusion across the world.
Below is one of Martha’s pictures and the introduction to Hope for the Families which I have passed along to my friends, my classes, and anyone who would read it.
Hope for Families of People with Disabilities
Not so very long ago, you and I were conditioned to perceive persons with handicaps as deviants. They were seen as…
Possessed by evil forces
Carriers of bad blood
A drag on the community’s resources
The products of illicit sex
Too ugly to be seen in public
Objects to be laughed at
A Group that would outbreed us
People with contagious sicknesses
Sexual monsters and perverts
Children who never grew up
Our parents and teachers conditioned us by what they said—or didn’t say—to feel uncomfortable around hose imperfect people. We were led to believe that if we got too close to them, something evil would rub off on us.
Consequently, persons with disabilities were condemned to struggle against TWO handicaps. One was the actual handicap. The other was he additional wounding they received from our prejudices.
Wasn’t the handicap itself enough? Why did we have to cripple them further?
Let me offer one theory to explain such behavior:
Once we believed fiercely that the world was becoming better and better.
And in keeping with this belief, everyone was expected ultimately to develop…
A pure heart
A brilliant mind
A beautiful body
A successful marriage
A high-status job
And live in a perfect society.
Then along came a few defenseless persons with obvious physical and mental handicaps. Their presence rattled our plans for a perfect world as a high wind rattles a loose shutter. We didn’t like that, and the result was that we could not stand to have them around us.
World War II
Then something happened. One country, in an effort to create a super race, started a world war. By the time it ended, the minds of all humankind were trying to comprehend the terrible things some groups of human beings had done to other groups. All of us tried to understand what had happened in places like Buchenwald, Auschwitz, Hiroshima, Nagasaki, London, Bataan, and Corregidor.
After World War II
After World War II, our belief in the gospel of world perfection began to fall apart.
And, we were reminded of some terrible facts.
All of us have gaps in our bodies and minds.
All of us are unfinished.
Some of us can hide our deficiencies better than others.
None of us will ever achieve perfection.
Those of us who think we are closest to perfection may be most likely to drag the human race to new lows.
Today we do not know whether the world is getting better and better—we only know it is getting more complex.
And yet it is an astonishing fact that humankind’s healthy interest in person with disabilities began to mushroom after the Holocaust and the Atom Bomb. One cannot help wondering if there is a connection.
Robert Perske Hope for the Families: Abingdon Press, Nashville, TN.1981. Click here for Robert Perske’s website.
Today, advocates in Ohio, Wisconsin, Indiana and other places around the country are asking the legislature to preserve Medicaid and other programs for people with severe disabilities. The crucial support programs our children need to survive are at risk.
Money is always scarce, but as Bob points out, we have made progress in our values and experiences of including people in the community. We have to believe in hope and better futures for our children.
I am reminded of two quotes:
“Those who do not learn from the past are destined to repeat it.”
“A measure of a society is how it treats its most vulnerable people.”
As parents we understand budget cuts and are even willing to concede progress will be slow, BUT we expect progress!
If you found this interesting you might also like a related article about Remarkable Parents who Never give up.
Keep Climbing: Onward and Upward
All my best,
What’s Your Take?, Be Brave and Share
Do you think our society values people who are different or have special needs? or, are we still just a drain on the system and resources? Do you think people with disabilities have two handicaps?
If you like this, please retweet and share with your community. Thanks.
note: Bob gave me permission to print excerpts from his book Hope for the Families.
Thanks to everyone who Tweeted, Facebooked (is that a word?) and otherwise shared information about Ed Roberts and his first official memorial day in California
The Ed Roberts Campus at Berekley California is open. The campus uses Universal Design and is built for EVERYONE. Here is an article about how the architect had to think differently about successful design. It is across the street from a fully accessible transportation system. Win-Win.
Historical Videos for YouTube
We had a great response to reformating the historical videos into segments for YouTube. We are creating a plan for moving forword. As we get news, I’ll pass it on. Thanks to everyone who so generously contributed in any way to this important project.
The Inclusion and Disability Rights Movement has come a long way, yet we have so much farther to go.
Adapting: Becoming a Star
Ed Roberts often joked that in the first 14 years of his life he was “just an ordinary kid.” He was more interested in sports than in school work and wanted to be a professional baseball player when he grew up. That all changed.
In 1953, before the vaccine, Ed contracted polio. Overnight he became paralyzed from the neck down and required an iron lung, which he used the rest of his life.
One of Ed’s greatest talents was being able to look at a situation, and ADAPT.
Ed decided a baseball career was out, and became a straight A student in High School.
When all the students stared at him, he decided this was an attitude problem. Instead of being embarrassed, this was how it must feel to be famous. In time, he reframed the whole experience, adapted, and decided he would pretend to become a famous movie star.
Indeed he did become a star. How fitting we are now trying to get his video on YouTube. I think he would get a bang out of that.
Stares into Stars
This would also be a good tip for people who are being stared out. Parents, Caregivers, Teachers could all adapt this strategy and help “reframe” those stares into stars!
Skype and Technology
I just saw a video (2010) where a teacher and class used Skype to help one of the students who had cancer keep up with what was happening at school.
When Ed Roberts got Polio, (1952) he was quarantined and had to listen to his classes over the telephone. Think of the differences.
Skype would have been amazing to him.
When Ed returned to school after missing almost two years of school, he felt like a stranger. Not only had he changed physically, he was now paralyzed, but he carried the stigma of “polio” and having a “Quarantined” sign on his front door.
At 16, Ed had to start his life and start making friends all over again. Plus, with the stigma of “polio” people were afraid of him and he looked so “different.” If the students could have seen him over “Skype” they would have seen him evolve, and gradually they would have adjusted to his new learning style and physical appearance. It would have been a learning experience for all of them.
It’s nice when students send get well cards, but including the student on Skype shows another dimension of caring.
BTW: home with Skype is the least restictive environment for this child at this time.
The new Technology Act will make other learning opportunities available for people of all ages. Who knows what the future may hold.
Any other tips for reframing embarrassing situations Stares into Stars? Any other uses of technology you would recommend? What would you want if you had to miss school for a long time?
Keep Climbing: Onward and Upward.
All the best,
Last post, I shared some videos from the Norweigan Association of the Blind.Here’s a collection of videos about the IEP and Acronymns. I’m still looking for any videos or websites about the rights of adults with severe disabilities, autism and parents of adults.
I hope you will share your thoughts in the comments.
Who sould be at an IEP?
What is an IEP?
Special Education Acronymn Song
Keep Climbing: Onward and Upward
All my best,
Over to You: What do you think?
Do you have other YouTube videos to recommend? Other social media sites?
Does anyone know of any sites or videos about adults? Parenting adults with disabilities?
Last weekend Tom and I put our condo on the market. It’s a great condo (click here and check it out) If you buy it, I’ll be your blogging slave for life. (How’s that for an online offer?)
We’re moving to be closer to our kids and deal with health issues I talked about in the post “…the yet-to-be-disabled”(click here).
For the last 10 years, we’ve loved everything about our condo: our neighbors, the location, the resort setting, watching the morning mist on the golf course, and the fact Tom no longer had to rake leaves, cut grass or shovel snow. Tom did choose to nurture his gardens. Pictured is the smaller garden in the front of our condo, there is a much larger one with tomatoes (with old golf clubs as stakes) in the back yard.
In many ways Realtors are like the professionals in “special needs” and “Disability World.” (click here) Like most professionals, it is all about “being objective,” utilizing “best practice” and “scientific research.”
They would look at this garden for its curb appeal. Since I will NEVER be objective, I want to give you an unscientific tour of Tom’s garden.
Over the past ten years he has fertilized, tilled, and built up the soil until it is now rich and hearty. In Ohio, it’s been a dust bowl kind of summer, but Tom’s kept the flowers alive with his devotion and a lot of watering. He grew most of the marigolds and petunias from seed. He’s brought the impatiens back from death several times. He agonized over whether the white flowers would be better positioned between the pink and purple, or the red and pink. The golf flag was a Christmas present from Aaron. We bought the log on a Sunday drive in the country. The rocks are special: each camping trip Tommy and Aaron got to pick a rock to bring back for the garden. There is one from Chief Crazy Horse’s Monument (we bought it-don’t worry). There is one from outside Yellowstone National Park that has the yellow flecks in it. There is one from my sister’s yard in Colorado that caused the bomb squad to detain our luggage. Our neighbor even brought us two rocks from the coast of Maine on his last trip. You get the idea.
This might be “just some flowers” to an objective professional, but every flower, every rock is special. No one will even know a maple tree used to be out front, or we had to advocate with the home owner’s association to place the street light on the street (duh) instead of in the middle of the garden. Who would know a lawn mower propelled one of the rocks through a neighbor’s window. Rather than lose the view of the garden, she chose to redesign her window. Who would ever think the garden has a history and touched so many lives?
Though we can take the rocks and some planters with us, this little garden carries 10 years of memories. Like everything else in our move, it’s never objective–it’s very much personal.
Tomorrow I’ll be blogging about, “Turning it over to the professionals” a phrase which turns the blood of parent’s of kids with disabilities to ice.
What are your experiences? We are all on this life journey together. There are some adventures that just make us human. Share?
Keep Climbing: Onward and Upward.
All the best,
Alison and I are starting a Twitter hashtag #CB/BC Join us.
In case you missed it:
Day 1: “Every Day for 30 Days” Blogging Challenge or “IBP” (Individual Blogging Plan) Day 1 of the 30-Day-Every-Day Blogging challenge. (click here)
Check out what my challenge partner Alison Golden of The Secret Life of a Warrior Woman is blogging about today at http://alisongolden.com/