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 (not his real name).
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 who have gone before us and decades of struggle for individuals to be recognized, respected, 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 other men who were roommates with my disabled son. I quickly learned his name, my goal over time was to get his eyes to meet mine and to say hello. As I never saw anyone come to visit him, no family members, no friends, I wanted Christopher to know that he mattered. The only way I could think of showing him that, was to call 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 have seen quite a few men come and go at my son’s Residential home for severely and persistently mentally ill men over the past three years. Unfortunately, I’ve learned to recognize the men who will not make it. 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. How do they thrive in all of this “independence for all” furor? The ones who don’t “recover” on our time tables and cannot live independently.
And I also wonder, when did it become such a bad thing to need someone’s help?
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. We delivered the presents on Christmas Eve and 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.”
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 disabled son, I would have never met Christopher. I would have never known about the hidden plight of the severely mentally ill. And sadly, I do not think I would have cared. Years ago, I would have been in that ladies restroom drying my hands in that disability center, I would have been content and smug to think that 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?
I’m beginning to get an inkling of what I suspect is lacking as we rush the disabled out the door to premature independence and pat ourselves on the proverbial back: You. And me.
I am 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, there is a greater, quiet cost too as we over emphasize this admirable and worthy goal of independence. And you, and I, the able bodied ones…are missing out.
Today I can tell you, 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 can only guess that he was released somewhere, sometime into oblivion as many disabled severely mentally ill people are every day in America.
According to Treatment Advocacy Center, there are ten times more mentally ill Americans behind bars than in state hospitals. I am 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 o.k again.
P82 Project Restoration seeks to create a living environment where seriously mentally ill men receive care, respect and attention to individual needs. On their time table, not ours. Please check out our new website (still a work in progress) that now includes a PayPal donation feature.
So jump in, strap on your seatbelts and follow our progress. We're going to build a home for the Christophers out there...and it's going to be a grand ride!
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