Welcome to a first posting!
You’re currently reading the musings of a young adult male with cerebral palsy (who is not the person in the picture above – but hey, thanks, Google images). For the last couple years, I’ve had my mind focused primarily on making myself as independent as possible. Such a situation brings a lot of different thoughts with it, and right now, there’s one in particular that I think merits stronger consideration by everyone, whether inside or outside the disabled community. So here we go.
In recents months, in an extreme 180 degree turn from my former way of thinking, I’ve found myself feeling increasingly flustered. By what, you ask?
By the well-meaning but ultimately problematic insistence among able-bodied people that I must need help with things, wherever I am and (seemingly) whatever I’m doing.
It probably seems strange or rude to say that the rush to help constitutes a problem, but do hear me out. To be fair, there are as many variations on a given disability as there are individuals who have them, and many disabled people, either due to a genuinely-insurmountable obstacle or due to a lack of proper experience concerning how to overcome it, do need the help that society and the general public seems to be so eager to give.
To make things even more “fair” for the side I’m addressing, I was that person until the past year or two, and I needed the help people were so ready to extend in order to get myself to a point of stronger independence. Had people not been there to alleviate things a bit, I’d never have wanted to “go out” and try new things in the first place. I started community college in 2014 after having been homeschooled in grades 1-12 (all my siblings had it the same way), with very little experience of spending time on my own for long periods of time or having to rely on myself to get from place to place. In fact, a few months before starting community college, I was content to let people do most things for me, including what I now regard as one of the most odious and self-defeating things on my list: letting people push my wheelchair for me.
But eventually, things changed. Mindsets shifted. First, over time doing it for myself, I realized my endurance had increased significantly, and I was no longer slow or tired using my wheelchair. This made it so that getting out and about became extremely manageable, and now, with 2 years under my belt and lots of endurance exercise when I get the chance, I can go literally almost anywhere without concern. But that was just the tip of the iceberg.
For example, a couple months into my “newb” community college time, I soon discovered the possibly large problem presented by doors. Sure, the buildings have that fancy button you can push to make the door open, but I discovered more often than not that that button would end up not working. That presented two options: 1) find someone to open the door for you (awkward and not always feasible), or 2) find a way to open the door yourself, not relying on the button in the first place. Well, with YouTube, time, practice, many an awkward moment of people thinking I needed help and trying to do it for me, and frustration at how long it took to get right… I figured out how to get through doors, and now, it doesn’t make a difference to me whether the button is working or not. I can get in and out either way.
That then cascaded a whole series of “what-ifs.” Eventually, despite the initial fear it caused, I learned how to do wheelies – which aren’t just for show. They really come in handy getting over bumps and tough terrain. Then I asked myself just how durable my arms really were, and went from pushing myself a measly half mile to pushing myself 2 miles before getting tired out (and eventually I reached 4 and a half – though I was pretty worn out by the end of that!). Just recently, I finally found out a good way to get myself from my wheelchair to the floor and back again, which opens new doors – like pushups, and recovery if I should ever fall out of my chair. The rest has been details. So… if I could do “x,” why did I never make myself do “y”? Why should I need people to get things for me, take things places for me, open doors for me, and on and on and on? And eventually, I reached the point where I’m who I am right now, getting frustrated by the constant offers and, in many cases, direct, unasked for performances of “help.”
Before moving on, I’d like to clear one thing out of the way: the fact that people want to help and are so willing to help points to a good thing, as evidenced by my initial experiences. It goes to the credit of human nature that people want, and are willing, to help those who may need it. And indeed, considering that I was this person to the nth degree less than two years ago, there are certainly many people within the disabled community that either need, or at least severely want, the help that people are so eager to give.
But that, I would suggest, is where things get more complicated.
For the independently-minded person with a disability (which, ultimately, every disabled person should strive to become within reason – I would never have said that two years ago), the immediate rush to assist, to dumb things down, and to do things for the person no longer constitutes help. It constitutes a hindrance. I still deal with people rushing to help with things I’m perfectly capable of doing (thankfully – I’m very high-functioning and use a manual chair, but I do say that recognizing it could be different), or professors making fewer demands of me than of others (never making me move from my spot in the classroom, assuring that I shouldn’t “worry about” signing the roster, and similar things). The thought behind all this is nice enough, but it’s this very mindset that made me unable to experience greater independence earlier on in life!
By constantly doing everything they could to help me, by saying I didn’t need to do stuff, and by lowering expectations, they were essentially telling me that I couldn’t do “x” and didn’t need to worry about “x.” But you know what? That simply won’t work in life and will just perpetuate the problem of me not doing as much as I could do if I made myself and trained myself.
To more clearly see where I’m coming from with this, consider the following situation.
I’m finishing my second year of community college as I write this, and when it comes to life skills, I’d now categorize myself as 90% independent on a physical, day-to-day level (I would say I was probably around 50-60% two years ago. I got myself dressed and ate my own food, but there was so much I did not do for myself that i can’t believe I’m even the same person). So what accounts for the remaining 5%-10% now? I don’t drive a car (yet) and I don’t cook food (because I’ve never earnestly gotten around to trying), but that’s all able to be fixed. At the moment, I still live under my parents’ roof. Sooner rather than later, if all goes according to the present plan, I’ll be going to a four-year school, where, presumably, I’ll live on my own. After that, presumably, I’ll be living on my own. Whether it takes 6 months or 2 more years, one thing is clear: eventually, I’ll be living on my own.
Who do I have to make sure things get done when I’m on my own? That’s right: myself. I won’t have anyone else, and I won’t be able to rely on anyone else, and I’ll need to ensure that anything I do I can do – on my own. I won’t have people there to dumb things down, I won’t have anyone to ensure that I “don’t need to do” things, and I won’t have people available to help me 24/7.
Let’s go back, then, to the well-meaning but overbearing individuals who insist on doing too many things for me or making me feel like I probably can’t do various tasks for myself. How is that helpful for me (or for anyone in my situation)? The only thing it does it stifle opportunities in which I can learn to do things for myself, and it creates the mindset that 1) I need peoples’ help and 2) people will always be available.
That’s unrealistic and it stunts personal growth and improvement. From my experience and from those of countless others I’ve come across, I am truly of the belief that a physically disabled person can do anything he or she sets his or her mind to doing, and the only obstacle present is his or her will to discover ways to do it. The body will adapt if the person makes it, even if a different set of limbs or a different method is required compared to the “conventional” way of doing something.
So after all that… what am I suggesting in the arena of help and dealing with disabled people? I would say, first, thank you for your desire to help – but read the situation carefully. If a disabled person isn’t asking for help and makes no indication that he wants help, don’t force your help on him. Don’t say, “I’ve got it,” and proceed to do the thing for him – which I’ve gotten far, far too many times. Ask if he needs help, and if he says thank you, but no, believe him and move on. You may feel bad for doing that. He may look like he does need help. But it’s ultimately up to him, not you, and from my own experience, I can say that being able to do a given thing for myself without feeling pressured into “needing” help is immeasurably beneficial for my sense of self-esteem and my ability to function independently and well.
Sometimes, the disabled will need help with things, no matter the level of independence they’ve obtained. In my case? If I truly need help, I’ll ask for it. I will then thank whoever was willing to do it. But the ball is in my court, and I would suggest it’s best to leave it in the court of the disabled person. Let the person ask for help before assuming it’s needed or wanted, and trust that the disabled person knows what he or she is doing if the response is a “no thanks.”
This has been a bit long, but, very honestly, thanks for reading.