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When the Fight for Independence Leaves Out People With Severe Mental Illness

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I recently attended a public informational meeting related to policy changes within our state’s insurance program. Afterward, as I dried my hands with a paper towel from the wheelchair accessible automatic dispenser in the ladies’ restroom of the Disability Empowerment Center in my city, I couldn’t help but think of Christopher.*

I’ve attended events in this beautiful, almost palatial facility before. I even heard a speech given by our state’s governor here. It stands as a monument to the work of tireless disability advocates and decades of struggle for individuals to be recognized, respected and included in all communities regardless of ability and if possible, independent.

When I first met Christopher, an older gentleman with graying hair, he would not even make eye contact with me. He was one of four men who were roommates with my son who lives in a residential home for men with severe and persistent mental illness. I quickly learned his name, and my goal over time was to get his eyes to meet mine. I never saw anyone come to visit him — no family members, no friends. I wanted Christopher to know he mattered. The only way I could think of showing him that was calling him by name when I saw him. For the most part I was met with a “Hi, ma’am” as he slumped over and stared down at his shoes.

I’ve seen quite a few men come and go over the past three years at my son’s residential home. They’re typically older and come to the home without family support. Perhaps they’ve burned so many bridges due to the symptoms of their disease. Often their words, thoughts and motor functions are disorganized. They’re still delusional, agitated and often talking to themselves. To be sure, there are some men who thrive and eventually move on to more independence. But what happens to the more symptomatic individuals on the severe end of the spectrum of serious mental illness? Ones who are resistant to common treatments and who are not welcomed into community programs?

Last Christmas a friend of mine from church put together gift bags for the men at my son’s home. A generous donor gave us brand new Nike sweatshirts, one for each of the men in their own sizes. When we delivered the presents on Christmas Eve, I glanced over at Christopher and saw his face light up. Several days later when I dropped my son back at his home after his visit with us during the holidays, Christopher met me at the door. This man, who had sparsely uttered a few greetings to me over the course of several months, struggled to excitedly tell me thank you! “Ma’am, I have never had a Christmas present…I mean, not in a really long time,” he said to me.

I don’t share this story to toot my own horn: in fact, it’s quite the opposite. If our family had not walked through the difficulties of caring for our own son’s disability, I wouldn’t have ever met Christopher. I wouldn’t have known about the hidden plight of those with severe mental illness. And sadly, I don’t think I would have cared. Years ago I would have been in that restroom at the disability center drying my hands and thinking we had all come so far. For what can be lacking when we have lowered sinks, ramps, buttons to push open doors and yes, even accessible paper towel dispensers?

Because while the fight for independence is a noble one, it leaves out people like Christopher, and it leaves out people like my son. My son is not aware of his illness. My son will not take his medicine on his own accord. The level of independence my son can achieve is different than most who live with mental illness, but with the current system in place, he’s expected to take responsibility for a mental illness he isn’t even aware of.

I’m so proud of my son, and I so applaud and admire others living with serious disabilities who are able to overcome great obstacles and gain independence. There is great value in that. And yet, I believe there is a quiet cost as we over-emphasize this admirable and worthy goal of independence — a level of independence my son will never achieve.

Today, I have no idea where Christopher is. He had no one to advocate for him and as his symptoms worsened. No one intervened in time. He eventually had to be hospitalized again and I have a feeling he was released somewhere, sometime into oblivion as many with disabilities and severe mental illness are in America.

This year, this coming Christmas season, remember the Christophers in your community. They need more than a sweatshirt, they need you and I to connect with them again. To fight for them. According to Treatment Advocacy Center, there are 10 times more Americans with mental illness behind bars than in state hospitals. When we fight for independence, we can’t forget about them. I’m not suggesting we go back to the dark ages of institutions, but isn’t a prison cell just that?

We have to start being honest — we are our brother’s keeper. Some individuals need us. And that has to be OK again.

*Name has been changed.

Originally published: September 28, 2015
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