by, Renee Wood

Yesterday I was struggling to find a topic I could write about for my blog. Today Floris and I were having one of those rambling conversations that went from atheism to evolution to getting old. Then Floris said something like, “I could have made more of my life if I wasn’t dealing with this disability.” He wasn’t talking about his current status of being in a wheelchair — he was speaking of when he was younger and dealing with dyslexia and ADD. It wasn’t diagnosed until he went to the University of Michigan, where he was an English major, and realized he could not read as fast as everyone else. They tested him, and that’s when they discovered he had a severe form of dyslexia.

I responded to his longing to have been something more if he wasn’t dealing with those conditions: “Actually, you did quite well. Your undergraduate degree was psychology through the University of Michigan. And your graduate degree was in library and information science. For the time you were raised and went to college, they basically had no accommodations for people dealing with your disabilities. Plus, you went on to be a science librarian and worked in professional careers until retirement. And you did it on your own. That’s quite an accomplishment, I would say.” He agreed.

This got me thinking about what I have tried to stress to the system for many years — “Too much support is just as harmful as not enough support.” I am witnessing this with young people with disabilities today. In my generation, we had people with severe cerebral palsy and spina bifida who were toileting, bathing, doing housework, and living on their own with very little support, and definitely no overnight support.

When I talk about severe cerebral palsy, I mean “very” severe cerebral palsy — but without any intellectual deficits. They were wheelchair users full time, all four limbs as well as speech were significantly impaired, yet they managed to learn how to do daily tasks. Did it take them a significant amount of time to do these tasks? Yes! But I don’t think one of them would say they regret living on their own without 24‑hour support. There is just something about the accomplishment of doing it on your own. But it’s not only the accomplishment — it’s the freedom of not having to deal with other people in your face all the time. Or not always having to defend why you want to do something or how you want it done. Yes, when you get older and already have a disability, your body fades quicker and you will need more and more assistance with age. But no one in my generation who was able to accomplish living with minimum support when they were young would have given up their freedom for more support.

Before I go further, I want to make something very clear: when I talk about independence, I am not talking about doing tasks by yourself. That’s “freedom”. Independence is something different. A person can need total physical care and still be completely independent. Independence is autonomy — the ability to make your own decisions, direct your own life, and govern yourself. Some people never gain the physical skills to do things “independently,” but that does not mean they lose independence. What they lose is freedom: the ability to live without someone constantly in their space, constantly watching, constantly directing. When you’ve known that kind of freedom, you don’t give it up unless the benefit outweighs the cost. If someone genuinely needs assistance to survive, that assistance becomes part of their freedom. But if someone “can” survive without constant help, that is almost always the preferred way to live.

I would be remiss if I didn’t point out that there are certain disabilities, such as muscular dystrophy or other degenerative disabilities, that will not benefit from muscular skill training. What they might gain at five years old they definitely would lose by the time they are seven or eight. In other words, if they can barely walk due to muscle atrophy at five, they definitely won’t be able to walk at ten. A wheelchair would be a very good thing for them. There are other things they could definitely benefit from, such as learning their daily care routine and how to explain that routine to a new caregiver. Also, children who are on a ventilator — even if they have no cognitive impairment — will need full‑time care.

The problem is parents usually see their disabled child as the worst‑case scenario, so they believe their child needs and deserves all the system has to offer. They do not realize they may be doing more harm than good if that child can indeed learn to be independent with less support.

As I watch the young people of today, I realize they could have gained more independent living skills if they just had the opportunity and the push to gain those skills. I say this because I watch them whip out their cell phones and type on them with their thumbs like it’s nothing — yet they have disability issues that prevent them from even doing basic tasks. This tells me they’ve done this task over and over since they were young, and that’s how they acquired that skill.

Just like when we were young, we did not have people at our beck‑and‑call to get us on and off the toilet, so we either had to wait or figure out a way to do it ourselves. Just like no one was going to help them with their cell phones, so they had to figure it out themselves. Probably if you ask these individuals if they would like help making personal texts on the phone, they would say no. Yet, because they’ve never done it, they are afraid to stay overnight alone.

Some of these young adults I am referring to in the current generation are in their twenties and thirties. Although not impossible, for most of them it’s too late to learn basic skills of getting on and off the toilet, bathing, and dressing themselves. These skills have to be developed at a young age. It starts with simple things such as not providing them with a wheelchair too young. Rather, allowing them to crawl around on the ground to build their muscles, play the best they can with other nondisabled peers their age, and highly encourage them to do things on their own — even if they can’t accomplish it the first, second, or third time.

I fully realize we live in a different generation. Even if there are two parents in the home, both of them may need to work to pay the bills. It’s scary for any parent to leave any child, whether disabled or not, alone for a certain amount of time after school. But at a certain age, this may be the best thing you could ever do for your disabled child, as long as they have the reasoning capacity to be alone. It’s okay to leave out a bag of chips and a sandwich where they can reach it. But they will have to figure out how to open the chips and get the sandwich in their mouth. With the current political environment the way it is, you may actually be saving your child from the horror of an institution.