Posts Tagged ‘history of people 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.
Check out the graduation pictures of my two sons.
What’s the same? What’s different?
BACK to SCHOOL Article 3
To celebrate the new school year here are some of my favorite posts:
Article 1: Why Do We Go to School?
Article 2: Back to School| A New Year of Learning
What is Inclusion?
The concept of INCLUSION is both simple and complex.
It means being able to go to the same school your brothers and sisters go to. The same school that is on the realtor’s fact sheet, you know the one: “If you buy this house, here is the neighborhood school you go to.” That’s simple, right?
In 1980 in Ohio, when my son Aaron turned 5 and was eligible to go to school, because he had the label of autism and developmental disabilities, he and other children with IQs below 50 were legally excluded from public schools. That’s complex.
It all changed because of Federal Legislation, yea those dang Government laws everyone hates.
When you suffer from exclusion and segregation, those Federal rules and regulations save the day.
History Lessons: Past
When new schools were built in the 50s-60s-70s-80s, the old white schools became “negro” schools. When even more new schools were built for the white children (think baby boomers), then the children with disabilities were moved up into the schools vacated by the “negroes.”
Schools: White to Negro to Handicapped to Demolished
The Education for All Handicapped Children Act was passed in 1975 and gave parents the right to a free appropriate public education, zero reject, related services, due process and the “least restrictive environment.”
At the time of the Neill Roncker and Aaron Ulrich due process hearings, the decrepit Dyer School was a handicapped-only school. Cincinnati Public Schools rented the school to the Hamilton County Board of Mental Retardation/Developmental Disabilities for $1.00 a year (Roncker hearing).
Parents and local Board of Mental Retardation officials were happy to be able to move out of church basements into the discarded school. They were also thrilled to be building new segregated facilities, handicapped only, with local levy dollars.
That was our court battle–to be able to ride the bus, go to school, eat lunch with typical kids… in our neighborhood school–not a “handicapped-only” school.
Inclusion is a civil right
“Inclusion is a right, not a special privilege for a select few.” – Federal Court, Oberti vs Board of Education.
For information about the history of children with disabilities check out the Minnesota DD Planning council’s excellent resource, Parallels in Time 2
History Lessons| Inclusion Today
Here is a recent video about a young woman with the label of autism. You will see her general education teacher, her parent, her inclusion facilitator, the general music teacher but most of all you will see the future citizens of our country.
Here is a picture of inclusion. A picture of hope. (Thanks to Donna Owens, OCALI)
Definition of Inclusion
Giangreco (see Resources) has defined the criteria for inclusion:
Students go to the same school as their brothers, sisters, and neighbors;
They participate in the same environments as their peers (lunchroom, bus, playground, classrooms);
According to their IEP, the student has the extra supports they need to be successful (therapy, adapted curriculum materials, an aide, teacher inservice);
There should be a natural proportion of children with/without disabilities, (if 10% of students are on IEPs in a school–no more than 10% of the students in any one class should be on IEPs).
An Inclusive Graduation Ceremony
So did you see any similiarities and differences in the graduation pictures above?
Almost everything about Tommy and Aaron’s Graduation ceremonies were the same. At the time, Lakota High School was one of the largest high schools in the state. Tommy and Aaron both had HUGE graduating classes held at the University of Cincinnati. Both had cheering parents and friends.
The difference between Aaron’s school experience and his typical brother Tommy’s, is evidenced in their graduation pictures above.
Aaron didn’t have to go through a segregated graduation ceremony and earn the right or prove he was ready to go to the inclusive celebration.
We did prepare by considering what would Aaron need to be added or subtracted from the typical graduation experience.
In his case, Aaron needed an extra support person, his wonderful teacher Mr. Mike Valdini. And, what needed to be subtracted–the mortar board hat!
I like to think our early battles for inclusion help the young children today—all of them, with and without disabilities.
Keep Climbing: Onward and Upward
All my best,
It now seems like the concept of inclusion has been around forever. But like any civil rights movement, we often don’t move forward in a straight line. What are some of your experiences?
Every day people challenge me:
Why do I believe what I believe?
What’s wrong with the Medical Model?
What’s wrong with the Charity Model?
What’s the big deal about “normalization” and “inclusion”?
Why is “special” not special?
Most times the conversations are stressful–the whole paradigm shift thingy. Most people don’t want to take the time to understand or learn a whole new way of looking at the world. They think their view of the world is just fine, thank you very much.
As parents, we have been learning for 30-40 years, our child’s whole lifetime. Our child demands we still learn every day.
For the next couple days, I’m going to be sharing some of the people who shaped my beliefs. Here is Norm Kunc.
I am hoping they can deliver the message of “normalization” far better than I ever could.
Norm Kunc changes lives.
I would spend the whole year teaching university students and teachers about the need for inclusion, normalization, self-advocacy, people first… and they would nod their heads (or scratch their heads at the crazy lady), pass their tests, and go on with the way they always did things.
Norm Kunc came to campus, spoke to these same students and in fifteen minutes–he rocked their world.
That quick–his message is that powerful.
Here is Norm and Emma Kunc’s website. I’ll write more about them in another post, but if you get a chance book them or attend one of their presentations. It will change your life.
Here is Norm’s Credo of Support. It is not the same as hearing him in person, but the video message shows the power of words and the talents of self-advocates. When Norm introduces the video he says the words just poured out of his heart.
Here’s hoping it touches your heart too.
Keep Climbing: Onward and Upward
All my best,
Talk about it!
What did you think of the Credo of Support? Do you think the message is stronger coming from self-advocates? What is your personal credo? Can you think of ways people with disabilities can give their own message?
Would you like to hear more about Norm and his wife Emma’s work?
Build a dream and the dream will build you. R. Schuller.
What is Normalization?
In 1981 when Aaron was 6 years old, my friend Debbie Wetzel and I drove to Louisville, KY to hear Wolf Wolfensberger give a presentation on “Normalization” or “Social Role Valorization” as he renamed it.
Like many parents before us, this philosophy changed our whole way of looking at our children and their futures.
As Debbie said about her daughter, “Jenni is not going to lead her life wrapped up in cotton and stuck on a shelf. She is going to have as normal a life as possible.”
On the ride home we also talked about what this new way of thinking was going to mean for us as mothers and advocates. We knew our lives were forever changed. The segregated services that were currently our only options were no longer acceptable. We would no longer allow our young children to get on segregated busses taking them an hour-and-a-half across town to segregated schools and handicap-only recreation programs.
When I got home I outlined the following plans that were ambitious and I knew (based on what we were currently fighting with our school district) maybe impossible to achieve.
The dream plans were based on what I had just learned about normalization and compared my dreams for Aaron, age 6, my son with the label of autism and developmental disabilities and Tommy, age 4, with the label of typicalness.
The concept of building community and normalized environments set the course of my life.
In part 2 and 3, I will be showing you how this 1981 dream evolved. Remember the language is from 1981 when we talked with words like retarded and group homes. This will evolve too.
1981 Dream Plan for Aaron
Aaron will be educated in a public school with his non-handicapped brother and neighbors. He will have a functional curriculum (see related post) which looks at his needs in his life spaces (vocational, leisure/recreation, domestic, general community functioning). His out-of-school activities will evolve around his family and his own friends, interests and talents. He will be in age-appropriate settings: elementary school ages 5-10; Jr. High ages 11-13, Sr. High ages 14-21, job in the community 21+. He will begin vocational training now, at age 6, so he will be able to perform the job. (If he isn’t able to be a dishwasher, then he can be a dishwasher’s helper, etc… there is some job he will be able to do with success.) At the appropriate time, Aaron will move to a group home to live with others his age. Though dependent in many ways, Aaron will have self-esteem and confidence in the things he does and be a contributor to his family, his extended family, and society.
1981 Dream Plan for Tommy
Tommy will be educated in a public school with his handicapped brother and neighbors. He will have a functional curriculum which looks at the needs in his life spaces, (academic, vocational, leisure/recreation, domestic, general community functioning). His out-of-school activities will evolve around his family, his own friends, interests, and talents. He will be in age-appropriate settings. He will make a career choice and pursue training (vocational, university, apprentice…). At a time he decides is appropriate, Tommy will move to his own home, probably marry and begin his own family. He will have self-esteem and confidence in the things he does and be a contributor to his family, his extended family and society.
The principle of Normalization originated in Scandinavia by Bank-Mikkelsen who began to compare his own life with the lives of residents in institutions for people who were then called “idiots, morons and imbeciles.” (Today we would say they have “intellectual disabilities” see related post on Rosa’s Law.)
Bengt Nirje a leader in the Swedish parent movement expressed it best:
a normal rhythm of the day.
You get out of bed in the morning, even if you are profoundly retarded and physically handicapped;
You get dressed and leave the house for school or work, you don’t stay home;
In the morning you anticipate events, in the evening you think back on what you have accomplished;
The day is not a monotonous 24 hours with every minute endless.
You eat at normal times of the day and in a normal fashion;
Not just with a spoon, unless you are an infant;
Not in bed, but at a table;
Not early in the afternoon for the convenience of the staff.
a normal rhythm of the week.
You live in one place, go to work in another, and participate in leisure activities in yet another.
You anticipate leisure activities on weekends, and look foward to getting back to school or work on Monday.
a normal rhythm of the year.
A vacation to break the routine of the year.
Seasonal changes bring with them a variety of types of food, work, cultural events, sports, leisure activities.
Just think…we thrive on these seasonal changes.
normal developmental experiences of the life cycle.
In childhood children, but not adults, go to summer camps.
In adolescence, one is intersted in grooming, hairstyles, music, boyfriends and girlfriends.
In adulthood, life is filled with work and responsibilities.
In old age, one has memories to look back on, and can enjoy the wisdom of experience.
having a range of choices, wishes, desires respected and considered.
Adults have the freedom to decide where they would like to live, what kind of job they would like to have and can best perform.
Whether they would prefer to go bowling with a group, instead of staying home to watch television.
living in a world made of two sexes.
Children and adults both develop relationships with members of the opporite sex.
Teenagers become interested in having boyfriends and girlfriends.
And adults may fall in love, and decide to marry.
the right to normal economic standards.
All of us have basic financial privileges and responsibilities;
Are able to take advantage of compensatory economic security means, such as child allowances, old age pensions, and minimum wage regulations.
We should have money to decide how to spend, on personal luxuries or necessities.
living in normal housing in a normal neighborhood.
Not in a large facility with 20, 50, or 100 other people because you are retarded;
And not isolated from the rest of the community.
Normal locations and normal size homes will give residents better opportunities for successful integation with their communities.
W. Wolfensberger; B. Nirje; S. Olshansky; R. Perske; and P. Roos, The Principle of Normalization in Human Services (Toronto: National Institute on Mental Retardation, 1972).
Recently Anne McDonald died, her story Annie Coming Out told of what it was like to live in an institution–not normal environments–where you were only seen as a group, never an individual (see related story).
If you are interested in more information about the history of people with disabilities, institutional settings and/or the parent movement check out Parallels in Time I (click here) and II (click here.)
Have you ever gone to a lecture or workshop and come out a different person? Do you agree with the principle of normalization? Can a person with and without a disability both lead normal lives?
Keep Climbing: Onward and Upward
All my best,