Robert and Martha Perske
Today I was thinking of Martha and Bob Perske. Martha’s beautiful sketches of children with disabilities are in frames over my desk and in buildings all over this country. Bob is now gone, but as we each get older and wonder if our lives really mattered Bob is one of my inspirations of a life well lived.
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 a great person. People with disabilities and their families are fortunate to have him in their lives. Martha, his wife, uses her talent to create pictures that 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
Subhuman organisms
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 North Carolina, 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,
Mary
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 it with your community. Thanks.
Related Articles:
Bob Perske| The Song of Joe Arridy
A Comparison of the Service System and the Community
2012 Article on Joe Arridy “Here lies an Innocent Man”
note: Bob gave me permission to print excerpts from his book Hope for the Families.
Even though the government is trying to take action of accepting those who have disabilities, I believe there is much more that can be done. I think that organizations need to step up and make themselves heard, and raise more awareness in our society. I rarely hear about this matter in the media today, and would like to hear more. I think that Bob’s information about the history does help, but more people need to stand up and advocate.
You’re right Morgan, we need individual voices–thousands of them. It’s hard to understand our culture–we really don’t like to talk about disabilities.
I do see a gradual progression of understanding and accepting people with disabilities although I think it is not at the point where it should be yet. I believe the more people understand people who have disabilities the more likely they will realize that they are capable of so much more than what people expect. Even though money may be an issue that does not mean it should stop people from looking at another perspective and grasp more understanding about people with disabilities.
You’re right Hannah, it is slow progress–but it is progress. I hope Bob Perske’s look at the history helps put things in perspective.
A connection between how society treated individuals with disabilities before WW2 and after could definitely exist. The stereotyping and prejudice against many races of that era resulted in mass killings which may have led to a more accepting society in the future. As Bob states, “Those who do not learn from the past are destined to repeat it.” We have not repeated the past, but have been improving from the events that have occurred. In present-day, although not every society or every person (even in the U.S. despite the laws), feel the need to treat intellectuals with disabilities with equal rights, more people promote or at least accept them to have equal rights. Compared to how Jews were viewed in WW2 and overcame the judgments, individuals with exceptionalities have the same potential of overcoming society’s slurs. The world may never be perfect, but society can always improve. I believe our society does value people who are different or have special need because as humans, we are always trying to be better, more generous, more accepting. People with disabilities do have two handicaps with their own disability and the judgments people form of them. Although some societys seem more accepting of intellectuals with disabilities, sadly, not all negative perspectives can be changed. And on a brighter perspective, an intellectual’s disability could be what makes them unique, hindering them from any disability at all.
You are right Meredith, we can learn from the lessons of the past.
We have made progress, yet right now we are learning of terrible events in Syria and have to wonder how can this be happening, again. I certainly can’t understand how one powerful group can be so hateful to others. We saw such horrors in WW2, can’t we just learn and become a more peaceful world?
“People with disabilities do have two handicaps with their own disability and the judgments people form of them.” If we truly understand this statement, we can change–at least–our attitudes. All people need understanding and empathy, we can be stronger if we value our diversity and differences. But, oh my, that lesson is so hard to live.
I do believe that as time goes on, people are becoming more understanding of a person with disabilities. Being informed and educated on the subject plays a big rule on valuing a person that is different or has special needs. During World War II, I think many people did not understand what being different or having a disability meant. Hopefully this changes as time progresses.
You are right Megan. I think we have made much progress since WW2. Actually history (going back to Caesar’s Gallic Wars) has shown us that after a war, citizens are more aware of people with disabilities because so many soldiers became wounded in the service of their country. I just get chills when I read Perske’s words. So much of WW2 was about trying to make a “perfect race.” And “perfect” means we all have many imperfections.
From all the blogs I’ve be familiar with lately, this undivided seems to be the most moving – it gave me something to consider about.
You’re right, this is one of my favorite posts by Bob Perske. It says so much.
Gary and Mary have you seen the documentary “Human Resources: Social Engineering in the 20h Century”? It’s an excellent, if grim, discussion on the dark side of behaviorism.
It’s free on you tube – look it up!
Thanks Leigh, I’ll go check it out.
https://www.youtube.com/watch?v=5JapjpO3mRg
Powerful stuff about Behaviorism, current behavior modification, ABA etc…
Wonder what happened to little Albert?
I almost forgot to say that I agree with Leigh that until we end the need to be hyper competitive we won’t see much change. I would add the strange spiritual disease of needed to be seen as number 1. Not only do you see this strange affliction as individuals but as families and all the way up to the nation-state level.
God help us all.
Hi Mary as someone who himself has and still faces the battle of disability from birth I would say that there are indeed tow battles. I have heard it put differently though. Ken Wilber a major philosopher of the late 20th century and early 21rst century put it this way. Their is the disease and then their is the meaning attached to the disease. Of course you can easily substitute disabilities for diseases.
I do think that most people see us as a drain. We don’t have regular jobs for the most part. We often don’t get the right teaching and training to begin with and as you well know from Aaron things only get worse as an adult.
So overall from where I sit we still have a long way to go and with all the budget cuts and transformations of our society we will need a great deal of compassion and good karma to overcome these difficulties.
As always have a great and wonder filled day
Thanks Gary, you have been a witness to the possibilities of our times. We have new technology, we have better educational programs and training. There is much hope if we just use what we know.
Thanks for this, Mary. Typical Bob. Gentle, clear, beautiful and spot on.
xxoo Anne
There are a couple more articles from Bob’s book that are wonderful. It’s hard to believe he wrote them in 1981–they are still so relevant.
I sent Bob a copy of the post and he was very gracious. What an amazing man who touches so many of our lives.
At university I studied the Social History of medicine (specifically disfigurement). I would have to say that people with disabilities are most definitely still fighting two battles — so long as the world is seen as fundamentally a competitive fight for resources and not a creative process – abilism will hold the trump card.
The movie The 300 has very interesting depiction of the “twisted body – twisted mind” trope of disability.
Interesting Leigh. I didn’t know they even had classes about disfigurement. I’ll have to look for the movie 300. It is such a long battle. I hope in 20 years people will look back and see lots of progress.