Monday, May 5, 2008

Why I Am Not Like You...An Imaginary Response

In response to people who think others with disabilities are the same as them, that disability is an arbitrary division of people much like other divisions of people, I have to turn to the diversity model rather than the sameness model.

In terms of physical disability, we are not like "you" (here, I mean the abled, not my readers with disabilities). Having a scooter or wheelchair doesn't make us the same. Wheels don't equalize the "playing field." As a matter of fact, we can't access the playing field.

Case in point: I received an email today from a close friend. Her adaptive keyboard is broken and her voice software inadequate to meet her needs, so she says not to expect email from her for a few weeks until the keyboard can be fixed (under warranty, very expensive replacement). She will, however, continue to read email. She wrote 4 sentences total, and mentioned at the end that it took her 29 minutes to type her email, i.e., she really isn't ignoring people and really can't respond. Some of her family and friends need to know this because they don't "get" it. Those who think we who are disabled are the same but different miss the huge efforts required to complete everyday tasks and that often there are tradeoffs that must be made. Even using voice software or an adaptive keyboard is difficult for her. You can imagine how much more difficult her work will be this week.

Another case in point: Unless you find yourself jumping up in the middle of the night shrieking in pain ("jumping up" being a relative term) or have other similar challenges, I'm not like you. That's why your recommended yoga, acupuncture, walking (!) recommendations don't work for me, not most of the time. Great that they worked for you. They don't for me. I can't increase my exercise without decreasing my workload, because increasing my exercise, especially walking, increases my pain so greatly that I cannot work. Thus I'm pretty ticked at someone at work, someone I barely know, who said I needed to be walking more. My perspective is that I should have purchased the scooter four or five months earlier. Ideally, I'd both work and walk. Right now it's a choice between the two. My lower spine pain is so much less, so much more manageable.

I didn't know until last night that there is a muscle spasm similar to severe leg cramps (I mean the kind that make you double over) in the neck. A quick Google search tells me it's called acute torticollis (fancy name for "bad neck spasm," or "make your own cute turtle collar"). I ended up dozing off while standing up as I tried to continue dealing with the pain. I'm not sure what brought it on. It felt like my bones were being pulled aside, and I'm still sore. Probably something to do with the disc issue.

I am not glum, as my recent spate of posts may sound, much to the contrary. I'm just sleepy and busy and a little pensive. I've been running a fever (just got presurgery labwork back that suggests a hidden UTI that I have to treat pronto) and have ankle swelling with large hematomas (?!). My sister and her family will also be here for four days. Lots to do this week, and we're having 23 people over Sunday. My husband asked if I really thought that was a good idea. Of course it's not a good idea. It's a terrible idea. But I really want to do it.


Gaina said...

Oh, to have people who 'get it' in your social circle. I have made some new friends since going to University and we've become very close very quickly, we just 'clicked' in that funny way you do sometimes and they ask me all kinds of questions which I answer very honestly. It's so refreshing to have people say 'I can't imagine what it's like to be you, and I can never presume to know, but I can try and learn'. Sometimes that's just as good as the people who really do get it.

Sometimes it's really hard to keep your patience when you've heard the 'racing' and 'wheelie' jokes for the billionth time but I just try to remember than people often use that to cover their awkwardness.

FridaWrites said...

I had not thought of that before--that sometimes the jokes might be because people feel awkward. How terrible and embarrassing for them to want to make a connection and say something that's off-putting!

Wheelchair Dancer said...

Oh so true. Sometimes, I am just going to run right over the next person who tells me that they get disability because they broke an ankle. That I should be able to do more than I can because last week I did.



Please keep us uptodate on all your surgeries and stuff. Concerned hug.

FridaWrites said...

Thank you, WCD, for your concern. I'll post something about the upcoming surgery in a bit.