by, Renee Wood

Man, so many younger people with CP (between 49 and up) that I went to school with and seeing on Facebook, (they were in grade school when I was in high school) are in Nursing Homes now – because they fell, or had surgeries and, they, or their families have no clue of the resources out there to keep them in the community. Their CP was never as involved as mine. They go to nursing homes probably for recovery and never come out because the nursing homes say that they can’t live on their own again (the nursing home probably wonders how they ever did it in the first place)! I call them the lost generation of people who were born disabled, but had IQs over 70.  This means Developmental Disability (DD) services wasn’t readily available to them back then.

Before the mid to late 70’s, in the Toledo public school system, even if two students had the exact physical limitation, where they were placed in the school system depended on IQ. These were totally different educational systems. One was for students with physical/orthopedic disabilities (referred to as “handicaps” back then), the other bear the label of students with “Mental Retardation”. After graduation from high school, students with the label of “Mental Retardation” ended up in sheltered workshops through the County Board of Mental Retardation. The County Board had other services as well. Those labeled to have physical disabilities either fended for themselves, went to Bureau of Vocational Rehabilitation, or just sat home. We didn’t know we qualified for County Board services because of the diagnosis in its label. To be quite honest though, even if, we with CP, had known we qualified for these services we would have steered cleared of them because of the label of “Retarded”. We were called that by others, even those in our school who had disabilities other than CP, and we fought hard not to be confused with that diagnosis because it would put greater limitations on our lives, and make it harder to be seen as “normal”.  So what was “normal” to us with CP then – college, good jobs, typical friends, boyfriends/girlfriends – just a normal life I guess. And even if we never got there – we were free to dream. Back then, and even now I guess, people with cognitive disabilities were associated with sheltered workshops, and we had zero aspirations to work there.

Many of us found our sea legs and had somewhat “normal” in our lives. Doesn’t mean we all got jobs, or didn’t have our hearts broken by unrequited love – but we were free! As adults we made friends who didn’t see our deficits, and no longer had our mental faculties labeled as something other then what they are.  It’s like if one is a woman with very short hair and labeled as “lesbian” but she’s not. Nothing wrong with being a lesbian if you are, but people want to be known for their authentic selves.  And being seen as are authentic self is what we see as “normal”! So my old, younger friends, who’s CP wasn’t as significant as mine, are residing in nursing homes because they needed more physical assistance as they aged, and didn’t have the knowledge to know there were resources to keep them in their home, or an advocate that could stand with them to encourage them through the process.

My dilemma is, county board services for people with DD could greatly benefit these individuals at this time in their lives, but I am at a loss if I should even mention the possibility of county board services because of the lifelong stigma this system carried for them, and they managed to avoid it.  Remember, these are your “average Joes/Josephines” who lived their lives outside the “advocacy world”, who made friends, lived in apartment complexes designated for those with physical disabilities, may have had some odd jobs now and then, but mostly lived a contented life in a construct of their own making with what the world offered at the time.  There is nothing wrong with that – many non-disabled have done the same thing.  For people like these who have moderate CP with full cognitive functioning, just to live outside their parents homes, outside a system (other than Medicaid sending a housekeeper), they lived in freedom.  I’m not saying it was absent of problems by any means, but by in large they were free to live unencumbered in that space.

Often on Facebook I see them express their displeasure at life in a nursing home, so I reach out and private message them to see if they were just having a bad day, or if they were overall dissatisfied on an ongoing basis.  It’s strange how people adapt to what they’re told.  I guess when you live in isolation with limited knowledge of law, or what resources are available to assist with getting the life that you desire, you tend to believe what you’re told by those who are around you daily.  Even if you hear conflicting information, you’re going to tend towards the information from those around you because the outside information is usually from those who are “drop-ins” but have no vested interest in you, or so it seems.  It makes sense, are you going to believe someone who wipes you’re butt, even if it is 45 minutes after you asked?  Or someone who pops up offering you something “idealistic”, when everyone around you says doesn’t exist?  Classic Stockholm Syndrome.

When I start conversations with them on messenger exploring possibilities for them, they tell me that “I’m lucky”!  Those words sting whenever I hear them for a couple reasons.  First, I remember using those words between the ages of 24 and 38 about my disabled friends, or other people with disabilities who had “made it”; jobs, significant others, homes, etc., while I’m living in subsidized housing, in poverty and lonely.  I called them the “super gimps”, the “elite crips” and didn’t see much difference between me and them, other than “luck”, and what I imagined (whether true or not), parents with pull.  Yeah, I had a lot of disdain for them then, especially when they would say, “All you have to do is try harder”.  Made me want to say, “Fuck your elite-privileged-gimp-ass!  I am trying”!  Now I’m seen as the “elite-crip”.

Second, these words sting because, even though undeniably there’s some luck involved, I never stopped jumping at any opportunity that might enhance my life one way or another.  I never was content with “This is just the way it is, and the way it will be the rest of your life”.  This, to the reader, may sound easy, and like “Of course you should always jump at opportunities”.  When you’re younger, before 28, even 30, maybe, but once you’ve hit thirty, and lived on your own for 5 years at least, it’s a lot harder to dump over an apple cart chasing opportunities that haven’t panned out in the past!  Your routine is in place, you know who you can count on, maybe it’s not exactly what you wanted from life, but it could be worse, so just be content and stop dumping the apple cart because every time you do, things are never the same, and you have to adjust to a “new normal” again.  Chalking it up to pure “luck” also stings because it negates the lengths I went through to NOT end up in a nursing home after a serious illness or an accident.  It wasn’t just “luck”, it was preparation so that would not be an option.

That’s why now when I talk with these people, I agree that there is some luck involved, but I also make a deal with them that as long as they are trying, I will be in it with them.  I make this deal because I know there’s nothing lonelier than “know it alls” that get you pumped, and leave you to do everything yourself.