What is a Quality Life?
Taking the role of David’s primary advocate has been challenging and often confusing for both of us.
- Who am I now? Am I a sister? A friend? A parent? A case worker?
- How can my “power” be used to support David’s willpower? Does it override his? Am I overstepping? What choices are David’s and what choices are mine?
These questions are very profound and get to the heart of civil liberties, civil rights, and personhood. Great philosophers have struggled with these questions! Thomas Jefferson, Martin Luther King Jr, Pope John Paul II. I mean, these are serious brains who’ve struggled with and posed these questions through the ages. But for us, they are not just intellectual questions. David and I HAVE to work out the practical answer to these questions — our daily lives depend on it!
In thinking about my role, I think it comes down to this: Does my role enhance David’s “quality” of life? Notice, I don’t ask if he is HAPPY. I ask if he has a quality life and does my role contribute to that.
What is the Definition of a Quality Life?
Pope John Paul II said “People with disabilities must also be enabled to participate in social life as far as they can, and helped to fulfill all their physical, psychological and spiritual potential.”
So what is a quality life? It is about participating in society and striving to reach your full potential.
We grew up in a row house in Philadelphia with 10 children, 2 adults, 3 bedrooms, 1.5 bathrooms and a dog. Our mother and father knew they were looking at the end of their lives and made the decision to place David in a community living arrangement. David moved to a house with 4 other men. 5 men, 3 bedrooms, 2 bathrooms, 2 stories. A big improvement ! (Even today, I measure my quality of life by my wait time to get into a bathroom )
Our mother visited every day and David came home on many weekends. Our parents aged and eventually my father passed. And just before our mother went in for heart surgery, she took me aside and made me promise that I would never move David. That I needed to respect the fact that the people in that house were his family. So I never even thought about moving David. To do so would have been to defy my mother’s deathbed wishes. She had the best intentions. And she was right, in theory…
But we didn’t factor in change… I didn’t visit every day. In fact, I lived in France. David went from daily family involvement to minimal involvement. Staff turned over. A couple of the roommates changed. And eventually I started noticing some big changes with David. The most noticeable of which was that David stopped sitting on the couch and started scooting on the floor. He refused to walk anywhere and so he was getting pushed in his walker everywhere. We thought shortly he would not be able to walk anymore. David was afraid! The house was crowded. He managed to lower his risk by lowering himself to the floor! Finally I had an epiphany. This lightbulb appeared over my head:
You are here to serve David not your mother!
I knew that something had to change and we looked for a new house for David. David’s new house is a single story, fully accessible rancher. 3 people, 3 bedrooms, all on one floor. By the way, his roommates happen to be two women! He has a very beautiful yard. He has his own private space and his bedroom has enough room for his own sitting area. Once David moved to this house, there were several changes to his behavior. First, David has started walking more, longer, and more frequently — independently meaning alone and without a walker. He gets up and goes to his bedroom when he wants some personal space. The second thing is that David started vocalizing more to express himself with words! As children,David used to speak. Imagine, there were 10 children and 2 adults speaking to David every single day. He used to speak. He could say our names, hello, goodbye, ask to drink and eat, and various other things. He stopped talking all together when he went to school. Infrequently he would make sounds like words forming in his throat. It was very rare. To hear David expressing himself with his own voice! I can’t tell you how overwhelmed I was.
But, while a good home contributes to helping David fulfill his potential, is it enough?
Even still, every day I am worried. When the phone rings and the provider calls I hold my breath for their first words. Hopefully they are “everything is fine.” And if everything is not fine?
I received a phone call once. They did not say “everything’s fine.” instead they said “Davids in the emergency room.” I don’t recall the drive to the emergency room. I do recall seeing David with a gash on his head from front to back. I was there when they stapled his scalp and held his hand when he screamed in pain. And I saw red in my eyes and tasted copper in my mouth.
A part of me wants to bundle David up. Keep him safe. Tuck him away someplace so that no one will hurt him. But I have to acknowledge that David is not a baby. He is a man. And he must participate in society and fulfill his potential. So, we have to take risks.
- David goes to baseball games.
- David takes long car rides — like coming here to Harrisburg.
- David goes swimming at the YMCA.
All of these things are activities with statistical risks: drowning, falling, car accidents. The world is rife with risk! But David has become a member of his community and has grown as a person through these risks.
Helen Keller said: “Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved.”
To protect David from risk is not kindness. For David to go into the community and try things. See if he likes them. See how he grows from them. Potentially fail. Potentially get hurt?
To Risk? This is to live.
I have to allow David to live. And through his doing so, he has and he’s become a man of character.
He might be a man of character. But if David lives his life to his full potential, is he a man of worth? Does David “count?” Does he matter? A person with more severe disabilities, what is their worth?
This year was the first time I personally met people who thought of people with developmental disabilities as objects. Who saw them as pillows to be fluffed or taught to fight like pit bulls. There are people who believe that people like my brother are nothing but an object and treat them accordingly. These people focus on what David cannot do. They describe him like a checklist, like a diagnosis. what are his toileting skills, his vocabulary, fine motor skills, hours of support required, ambulation. They expect nothing of David.
In our time, in our beginning, there was nothing to expect. In our beginnings there was only the option of institutions, being hidden away. People were locked in rooms and even basements. Hidden from society. Low life expectancy and no life. To stay with the family, to be outside in the daylight, on the porch — well, that was considered something extraordinary back then.
If going to a baseball game or out on a boat is “better than nothing” or “better than sitting at home doing nothing” — Well, when we measure “quality of life” as better than nothing? It’s just wrong. In one of my careers, I was an expert on quality. All those metrics. We call it a baseline. The expectation to which we measure things. For people with more significant disabilities… to have a baseline of NOTHING?
But, this man, my brother David
- was involved in the PARC court cases and was in the first schoolroom in Philadelphia for people with severe disabilities — (predecessors to IDEA)
- marched on City Hall and Harrisburg (innumerable times)
- survived the death of 2 parents and his brother, Walter
- lives in a house with 2 women.
- goes to the YMCA, has memberships to the Art Museum, Aquarium, Longwood Gardens.
- loves the Phillies and gets tickets to baseball games.
- loves music especially jazz and blues and oldies and especially live music
- and he has done 5 presentations this year
- he has changed the world for countless others.
Don’t you think that’s SOMETHING? I’d say David adds a LOT of value! He is a man of substance. We must acknowledge the contributions of our friends and family with intellectual and developmental disabilities. We have to call attention to it. And we have to thank them for all that they have given to us: their family, friends, and community at large. And we must raise the baseline of expectation. We should not measure our success based on “better than nothing” but on “achieving potential.”
Goethe said: “If you treat an individual as he is, he will remain how he is. But if you treat him as if he were what he ought to be and could be, he will become what he ought to be and could be.”
One thing I learned this last year is the difference between the two perspectives is in our own minds, not in the capability of the man.
Hope and Action
To live life to full potential. In society. To risk. To grow. That is a quality life. We cannot stand in the way of this. And, to be David’s primary advocate I have to do more, I have to encourage it, foster it, fight for it. When successful, the sun shines brightly…
Martin Luther King Jr said “Let us hope that the dark clouds of prejudice will soon pass away and the deep fog of misunderstanding will be lifted from our fear-drenched communities, and in some not too distant tomorrow the radiant stars of love and brotherhood will shine over our great nation with all their scintillating beauty.”
END NOTE: Session participants know that one additional segment was in the live speech… a discussion of technology and self-determination, inclusion, and social networks. As I’ve done other blogs on those topics, I omitted them from this material.
There was a man who spoke to me at the end of the speech. He said, “I’d like to meet your brother, he sounds like quite a man.” At lunch David, his support staff and I were walking down the hall. The man and a few other people came up. I was able to introduce the two. The man took my brothers hand and told him how he heard all about him this morning. He recounted what he heard and David’s accomplishments. He thanked David for the value that he contributed. The rest of us? We were there to bear witness to humanity at its best.