Once We Were Caged

This post is my commemoration of the International Day of Mourning and Memory of the Lives of People with Disabilities. This is a day of remembrance of those who were institutionalized, abused and killed for being different. It is a day to remember those who came before us and who fought hard to make the world a better place for people with disabilities of all kinds. 

I had been in the hospital for several years, waiting for hip replacements. It was the culmination of a long period of hospitalizations. Since I was diagnosed with juvenile rheumatoid arthritis, finally, at age 9 after living with pain and swelling since I was four years old, I had spent more time in institutions than out of them. And now, having had a double hip replacements, I could sit up again, got a power wheelchair and halfway through my 16th year, it was time to leave.

This was also the time that one of the senior doctors took my mother aside and earnestly spoke to her about discharging me into another institutional setting, a group home for children with disabilities. Because taking me home would be "far too difficult." Because many others in her situation "would have given up." Given up their kids.

I wasn’t there, but I know my mother shot him down in flames. I wasn’t there, but I can imagine that she gave him The Look. The look she has that says more than words, that withers and shames. And she and my father took me home and gave me the biggest gift of all: a normal life.

I was lucky. I had parents who had strong opinions about where their children belonged and who fought hard against the pressure from without to tuck me away in a place where I would be less difficult.

Difficult for whom? My parents? My extended family? My community? The doctors?

Difficult why? Because I needed care? Because I needed a different way to approach school, transportation and all the other things that come with a teenager’s life? Difficult because I looked different, lived differently? Difficult because my presence in the community, in society meant having to face the reality that not everybody is the same? Because it meant having to accommodate the different?

Even so, because there was no choice, I spent years in and out of hospitals, many of them in a rehab hospital on the northern coast of Denmark. It was there that I got a thorough education in what it was like to be institutionalized. Because there, they had a philosophy of dealing with the children in their care. A philosophy deeply grounded in the belief of cold professionalism, of not indulging our emotions, of not responding to pain, of squelching any expression of individuality.

There,we were all dressed alike in blue track pants and red sweaters. There they ruled our lives, keeping us in the dark about medical tests and procedures. There you were expected to deal with the pain of rheumatoid arthritis quietly and without fuss. There you bit down on the pain of the needle going into your joints or suffered standing naked and alone in front of a strange man taking a picture of your body to record the progress of your disease. There you were expected to eat what was served without question or complaint. There you suffered homesickness alone and without comfort. There I learned that crying doesn't change anything.

I was lucky. Most weekends, I got to go home to my family, to be surrounded by love. To have an antidote against the chill, against the grating demand to not express what I felt, to be an automaton. An antidote against the inhumanity that framed our lives in that building. Because of that, I managed to hold on to my soul.

I don't blame the parents who went before and who followed the advice of doctors, giving their children to institutions. That was the world they lived in. In that world, the rest of society wasn't made to be inclusive of different. In that world, you did what the doctor told you to do, because they knew best. Who I do blame is the medical and so-called caring professions who made those institutions places with no warmth or emotion, places more like prisons, places of abuse and brutality. Places that damaged hearts, souls and bodies, places that killed. Sometimes outright, sometimes merely murdering the chance to connect to all that makes life worthwhile living.

And then the movement to deinstitutionalize started. Was it with parents like mine who refused to believe an authority that told them they couldn't cope with taking care of their child? Was it with those who escaped, somehow, into the world and told their story? Because of them, we now have the right to live integrated into society. The right to receive services like attendant care that allows us to live independently and participate in our communities. Not enough attendant care and sometimes, not good enough either, but it is there. So are other services, other agencies funded and mandated to assist people with disabilities of all kinds live independently.

Because of those who came before, we are here. We work, we love, we go shopping, we laugh, we go to restaurants. Because of those who came before, we now have laws like the ADA and AODA that guarantee our continued right to be here. Laws that enshrine the obligation of the norm to make room for the different.

We are here. Thank you.

As part of the lead-up to today, Dave interviewed Dana Masa, who co-wrote and performed She Never Knew She Never Knew..


mary said…
Very powerful. Very, very powerful. Thank you for sharing this.