I’ve been thinking a lot lately about disability and the associations most of us have with it. Disability has an extremely negative connotation in our culture, and we are encouraged to “fight” against illness and disability, and not give in to lower levels of functioning. If you are capable of doing something for yourself, you should do it.
I think that on one level, this perspective can be helpful. It can help us get through challenging times and stay active despite the limitations our body throws in the way. Being independent is important, and having ways that we feel “normal” is comforting.
However, I also think that at times this “fight against disability” mantra can really be damaging. And, recently I’ve begun noticing small ways that my own “fight” has actually held me back in my healing, engagement in life, and general outlook.
Although I have thrown around the concept of having a disability in the past, and I’ve certainly had to get used to a different lifestyle since becoming so ill, I’ve still pushed against the idea of being disabled up until now. And there were good reasons for that. I didn’t want to be defined by this illness, and I didn’t want to give up any positive level of functioning I had.
However, there is a subtlety in which accepting one’s disability doesn’t have to mean being defined by it. And really, accepting one’s needs and requirements is a whole lot more empowering than pretending they aren’t there and getting kicked in the butt over and over again, as you pretend to be someone you aren’t.
This lesson really came home to me a couple of weeks ago.
Months ago, when I became more seriously ill, I stopped using my desktop computer and switched to using my laptop. With my laptop I could sit back comfortably with my legs up in the recliner, and not tax my body so much by sitting up at the computer. When I finished using my laptop, I would walk the 6 feet to the TV table across the room and leave it there.
Well, a few weeks ago I was having a flare-up and was struggling more than usual with walking. I slowly shuffled along with my walker and had to focus intently on moving each foot as necessary. On that day I spent some time with my laptop, placed it on the TV table, and as I turned to walk back, tripped over the cord – thereby dumping the laptop on the floor, which broke it.
Enter a few hours of crying, exclamations like “What the heck is my problem?! How could I do that?!”, sitting bent over in frustration, and general self-blame.
My husband was very understanding, comforting, and reassuring. He happens to have a very old laptop from his school years that he didn’t think worked anymore. But, he checked and fiddled with it and found that although slow, it would in fact work! So, the next day I began using his computer.
And… can you guess? Yes, I did the exact same thing. This time, I managed to stick my foot out in time to half “catch” the laptop as it fell, so it didn’t actually break. But, it fell and the laptop probably didn’t enjoy it so much.
Enter another few hours of crying, self-blame, anger, and exclamations like, “What the heck is my problem?!!”
But, as this was the second time this had happened (in as many days!), I eventually calmed myself down and decided to look at why this was happening. And the answer was staring-me-in-the-face obvious.
What the heck was my problem? My problem was that I couldn’t lift my feet. This was not a character flaw. This didn’t mean I was an idiot. This was not some issue with me as a person. This was a problem with my physical health, and reflected that I lacked the ability to lift my feet enough to not trip over the computer cord. It’s as simple as that.
And so with that understanding, I calmly went to the small and ultra-light TV table and moved it next to my recliner. It was as simple as that. The table looks just as fine in its new spot as it did across the room, and now when I want to use the computer, I just sit on my recliner and then lift the laptop from the table to my lap. So easy, so simple, so obvious.
So the question is: Why in the world didn’t we move the table next to the recliner sooner? I think it had to do with trying to “fight” my illness. Not accepting my limitations. When I didn’t recognize and accept my needs, I couldn’t possibly recognize what steps could be taken to make this situation easier for me.
This is just one tiny and relatively judgment-free step I took for myself. By “judgment-free”, I mean that most of us don’t think, “Oh no! Moving the table closer to my recliner means I am disabled!” But, what if there are other steps I could take that might have that connotation? Accepting myself as disabled allows me to make choices that may help me actually be able to engage life more fully.
Moving the laptop didn’t only make it less likely that I would break my laptop. It also, in a way that I can’t quite explain, added to my quality of life. I don’t need to expend as much energy getting my laptop now, which means I can use that energy in other, more productive and vitality-enhancing ways. That energy can go towards my healing.
So, I’ve been looking on a few other things I can do for myself that I think will help me in a similar way. Although it means accepting that I need these things (which is hard at times, I admit), accepting my needs also is leading to some excitement about the possibilities that taking care of myself will create.
When I don’t have to expend my limited energy on inconsequential things, I may be able to use it for things that actually help me and lead to my healing more fully.
Some of the things I’m working on:
– I’m buying myself a seat for the shower. Showering is very difficult for me, and totally wipes me out for the rest of the day. As it is, I try to shower once a week, but even that is quite a strain. I think that no matter what I do it will be tiring, but being able to sit for my shower will make a big difference. Maybe I can even shower more often!
– I’m going through the steps to get a disabled parking permit. I hardly ever leave the house, but when I do every step costs me something. A week or so I was using my cane, walking what seemed like a very small distance from our parked car to a store front, when I stopped to catch my breath. I realized at that point that I was standing where we could have parked in the first place, if I had this permit.
So, even if it only saves me 20 feet of walking, this permit will be worth it. Energy should be put into healing right now, not walking farther.
One good day a while ago I went to our local riverfront park and noticed that it too has a disabled parking area. If I could save the 10 feet walking through the parking lot, that might mean 10 feet more walking along the river, which would be lovely.
– Instead of longingly walking past the electric wheelchairs that sit at the front of our local food co-op (on the once-monthly day I go there), I am using it. Oh man, I can’t tell you what a difference this makes. This step really was big for me in accepting my limitations, but I did this for the first time this week and it really helped.
Although I was still exhausted by the whole store experience, I didn’t have to be in bed the rest of the day. And, when my consciousness was feeling fuzzy, as it sometimes does, I wasn’t constantly worried I might collapse. It really helped me feel more confident being in the store, and my energy expenditure was much less than usual.
– I may get a manual wheelchair so that my husband could occasionally take me on a walk or even into a small bookshop or something for a jaunt into the world.
This new way of thinking has not only changed some of the things I’m doing for myself, it is also helping me be gentler with myself. Recognizing that I have a disability means knowing that I have limitations and that I can’t hold myself to the same requirements I used to.
Getting exhausted by walking across the house or standing in a shower doesn’t mean I’m a bad person and need to try harder (I know, that may be obvious, but sometimes it seems that way at times) – it simply means I have a disability and I need alittle help with these activities.
It means I can be gentle with myself. It means accepting myself. And in the end, quite contrary to what I might have thought, this feels quite empowering.