Removing Barriers to Compassion
"It doesn't take a person to make me feel unwelcome, it takes a flight of stairs."
--Dr. Tammy Berberi
July 26th marked the 30th anniversary of the signing of the Americans with Disabilities Act (ADA). This milestone caused me to reflect on what equity really means. How does our understanding of this concept contribute to what we fight for?
For me, equity means the ability to fully participate in life’s joys and sorrows. It means the desire to “see” others’ wholeness and humanity and to be seen for same. It means the removal of physical, economic, and psychological barriers from the lives of individuals from marginalized groups. And it means fighting against the human tendency to engage in what Roshi Joan Halifax calls the “enemies of compassion”:
Fear, pity, and moral outrage.
Here are three stories told to me by Deb Roberts. Deb was my son Michael’s physical therapist from age one until his death at age seven. She was one of the most influential people in our family’s life—she saw Michael’s potential and she actively worked to remove barriers to his full participation.
How do you see the “enemies of compassion” play out in each of these stories?
1
I was working as a physical therapist at Children's Rehab Center. A five year-old came to me for the first time. I had not heard of him before because I was new. We had a great one-hour session involving lots of work and play until he saw a mirror and began to hit himself and say “I am bad and ugly.” I went to patient rounds to discuss him with the other specialists. I was surprised at what I heard. Everyone in the room had negative things to say about this child. The next day I watched him walk into recreational therapy and heard the therapist say to him in a demanding tone: "Are you going to be good today?!" I realized then how much a child's self-story is formed first by those around them. How could this child see anything but a “bad kid” when that’s what the adults expected of him?
2
I worked with a boy who had congenital Muscular Dystrophy from infancy through grade school. I stayed in contact with him until he went to college. He used a power wheelchair and could feed himself independently, but that was about it physically. His face and body were very disfigured. His parents, however, did not want to see or think of him as disabled. It was almost to the point of denial, except that they took tremendous care of his health. The parents seriously upset the physical therapists at the school because they didn’t want him forced to use a stander or other positioning equipment and refused to have him pulled out of classes to obtain services. The boy’s parents acted like he had every reason to have friends, to be funny, to be liked, to pursue any goals he wanted to. He was confident and friendly. If someone picked on him, he always found support. He said he was not teased any more than anyone else. At one point, the boy wanted to go to “Sport Camp” with his friends. His parents said “fine,” and called to make sure the counselors would welcome him and that he would be physically safe. He loved it and participated with adaptations thought up by the counselors and kids. One day he had an accident. He fell over backwards in his wheelchair. It turns out, he was very popular for Tug-of-War with his wheelchair. His parents were thrilled that he wasn't hurt but also that he had fully participated and had stories to tell. Of course, he got a lecture about proper care of his equipment!
3
I worked with a girl who had cerebral palsy and used a power wheelchair. She had a mother who didn't seem to notice her limitations and definitely had no time for the doctors with their prognoses or teachers with their testing results (the girl flunked her early IQ tests because her mother hated Mickey Mouse and she couldn't identify those characters). She was always stubborn to the extreme—as was her mother! She wouldn't practice walking until she wanted to go to church with her friend, whose father couldn't manage her wheelchair. She quickly learned to walk with a walker the distance needed. She refused to work on stairs in PT. Her mom moved them to a house from a mobile home. Her mom didn't want the nice living room messed up with the TV so she put it downstairs, even though her daughter could then no longer watch it (her mom wouldn't pick her up and carry her). It took a few days of self-motivated and independent practice for her to master crawling up and down the stairs. Another time, this girl wanted to wear make-up but again, her mom wasn't interested in extra work. It took months of practice and 2 hours at first to get her make-up on for school (she'd get up at 5AM!). It finally became manageable for her. She is now a woman in her 30’s and the first member of this family to finish high school and go to college.
Where did you observe the presence or absence of fear, pity, and moral outrage in each story?
