Disability & Body Image

Body image is a big issue and so is disability so disability and body image is a big(ger) issue. I’ve watched a few videos related to the “body image tag” from Robyn, Annie, and Gabby in particular, and it got me thinking (not enough to start a Y0uTube channel mind you). Here are my thoughts, in the hopes that maybe it’ll help someone in some way.

1) Do you think you are “traditionally/mainstream” attractive? Does it matter to you?

I don’t think I’m “traditionally/mainstream” attractive for a few reasons but the one I’d like to mention is because I have a disability. Mainstream society, thanks in big part to the media, doesn’t find disability traditionally attractive. So no I’m not traditionally attractive, but there is “a lid for every pot,” as they say, so I’m attractive to someone (hopefully not in that devotee way).

It doesn’t matter to me that I’m not traditionally attractive. I’ve put too much work into my body to make it functionally and “workable” for myself, but I’d be lying if I didn’t say I sometimes care, even slightly. What matters more to me is the devotee issue. From my experience I struggle with people finding me attractive without some sort of fetish attached to it

2) What was your biggest insecurity when you were a teenager? What is it now? How has your body image changed?

My biggest insecurity as a teenager was that people would notice that I was disabled. In hindsight it seems pretty ridiculous since it’s obvious that I have a disability. I wasn’t big on using mobility aids as a teenager because I wanted to blend in, plus I didn’t think I needed them.

My biggest insecurity is wondering if people are looking at me and why.  I know people look at me. It’s so commonplace in my life now that I hardly notice it but when I do I wonder why they’re looking at me. Are they shocked? Inspired? Unimpressed?

My body image has changed a lot especially in the last few years and it has a lot to do with my last surgery. I know most people think/feel that your self-image should be tied to an event or something else and I used to say the same thing. Then I turned 30 and things became solidified even more. I’ve come to appreciate what my body has become and the work I put into it. I’ve also come to accept that I’m probably not anyone’s idea of “perfect” but I am who I am take it or leave it.

3) How does your style play into your body image?

Style does play a part in my body image. I try to put some effort into my style knowing that in a way how I portray myself will impact how someone else will view people with disabilities. I don’t spend hours getting ready every day but I do make sure my clothes match and are suitable for whatever I have planned that day. Also when I feel like I look good I tend to tend to be in a better mood.

4) How do you define your beauty?

Is it bad that this is the hardest question for me to answer? I know I’m not obviously beautiful and I’m totally fine with that. But it’s not like I can point to one thing and tell you that’s what makes me beautiful either, probably because it depends on the day. I do have this odd sense of satisfaction of seeing a good photograph and realizing I’m either in it or I took it.

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#SayTheWord

Language & disability is a hard thing to navigate there’s no right thing to say, or right way to discuss it, that will make everyone happy.

I have varying points of view on the subject myself.

However, there’s one aspect disability language I do have a firm view on and I don’t see it changing anytime soon, if ever.

Disability is not a bad word.

Somehow it became a bad word, a word people avoid using whenever possible, even if it means coming up with terms like “special powers,” “differently abled,” or “physically challenged,” which for the record bother me far more than the word “disability” ever has and probably ever will.

One of the blessings of my degree program is the community that comes with it. We aren’t a bunch of people sitting behind computers interacting with each other, basically we are, but there’s a community aspect that I don’t think you get with other online degree programs.

One of my classmates in particular is involved in special needs ministry and had plans on discussing things for a while but never got around to it until I appointed myself the “good bye committee” since I totally sucked at being the “social director.” It just goes to show you should never appoint an introvert a “social director” without their OK.

We talked in the dark hallway, literally, for a while.

She wanted to know what was so bad about “special needs.” I pointed out that my needs were not any more special than most people’s. Also the feeling that I have that “special needs” has a shelf life and creates an awkward situation in terms of self-advocacy.

If you’re 3 and say you have “special needs” people will probably have a clue as to what you mean or they’ll at least be understanding on some level.

If you’re 33 and say you have “special needs” people will probably think something completely different, and along the lines of “diva,” “high maintenance,” and difficult to deal with.

She understood my point after that, but wasn’t ready to embrace the word “disability,” because it’s a bad word.

I pointed out that people, largely people without disabilities themselves, made it a bad word. It wouldn’t be a bad word if so many people didn’t insist on treating it as such, however it still states the truth regardless of personal feelings.

I read a tweet recently that puts things nicely:

Not long after this conversation with my classmate I noted #SayTheWord on social media. While I can’t say I agree with everything that’s been attached to the hashtag (but can anyone say that about any hashtag?) I do think it’s about time we have the conversation.

Why I: Don’t Feel Obliged To Advocate

A tweet came to my attention recently that I feel I should address.

However, I must issue a warning that it hit a nerve (or more like stomped on it) for me.  It might even have ventured into “trigger warning” territory with me but you’d have to check with Mac & Katherine on that one to be absolutely sure.

Now it’s an honest question and if I wasn’t part of the CP community in the way I am now, if I were a parent instead (for example), I might have the same question.

As someone who has Cerebral Palsy and is pretty high functioning I’m probably going to get some kind of backlash for my answer, but might get some sort of support too.

In short, I do not feel an obligation to reach out to those who are more severely effected by CP.

Now if we’re talking about reaching out in terms of forming friendships with those who are more severely affected; I’ve felt like people tried to force the issue when I was younger whereas it’s virtually nonexistent now. I don’t think you should be friends with someone just because you share the same disability. For me it would be like everyone with brown eyes being friends. More goes into a friendship than one commonality.

If we’re talking about reaching out in terms of community advocacy, my answer is still no, but longer.

We are one community but we don’t act like it, more importantly (from my point of view) we aren’t treated as one community.

The way I see it we’re 3 major parts of 1 community, and each part has an element of self-involvement, which is its biggest asset but it’s also the biggest obstacle for greater unity in the CP community.

In case you’re wondering, the 3 major parts (again according to me) are:
1) Parents of kids with CP
2) Parents of adults (who can’t advocate for themselves) with CP
3) People with CP

There’s a reason why I listed them in the order that I did with CP often receive the least amount of support (based on my own experience).

I’m sure you’re heard the saying, “secure your own oxygen mask before assisting someone else.”

My whole life I’ve not been what someone or an organization was looking for:
-I couldn’t get a wheelchair as a child because I could walk.
-I couldn’t try out for any age group swim team because I was disabled.
-I couldn’t receive intensive post-operative physical therapy (ordered by my physician) because I wasn’t disabled enough.
-I can’t learn to drive from anyone other than someone appointed by the state because I’m too disabled.
-I can’t receive job searching assistance because I’m not disabled enough.
-I can’t qualify for assistance grants because I can work.
-I don’t receive the most basic medical care because I have a disability & I’m considered too old.

I was in my 20s before I realized help wasn’t going to come and find me, like it seems to do for countless other people. I had to go find it and even finding help doesn’t mean that I’m going to get help. It’s always been a running joke that I’ve never really fit into a mold or set of rules, but this was real life and not a joke.

I don’t feel obligated to reach out to those who are more severely affected by CP because there are more resources out there for them. Also I can’t advocate for everyone in the CP community because it is so diverse. I stick to what I know best, but if that ends up helping more of the CP community than great.

I need to put on my own oxygen mask before I can help anyone else.

BADD ’16: Ablesim In Social Media

Today is Blogging Against Disablism Day. Blogging Against Disablism Day

I remember one of the first things I learned about the internet was don’t click on banner ads because most of them were viruses that could destroy your computer. As a result, it takes a lot to get me to even glance at an ad anywhere on the internet.

Every couple of weeks something happens to my computer, or rather the internet.
It thinks I speak Spanish.

I don’t know where or rather how it comes to this conclusion. I took Spanish for years in school but I can only remember a handful of words, none of which can be put together to form a coherent sentence.

I know people are worried that the data miners will find out too much about them from their social media habits. I have the same concerns; however, I’d need the internet to get something remotely right before I get that concerned.

In addition to thinking I speak Spanish the internet also thinks I use catheters (among other things) and want to sue people over the fact that I’m disabled.

That last one has made me change my social media engagement practices.

I realized that not paying attention to ads I am being complacent in what people assume I feel about being disabled. Yes, it would be nice to have more money at my disposal but that would mean stating that I think it’s wrong that I have a disability.

I’m sure whatever algorithms used pick up on the fact that I write about disability, and not being human don’t go much further than that. Still nearly 100% of the ads I see portray a negative view of disability.

Last week I started to not only look at the ads in my news feeds but do something about them too.

I’ve alternated between reporting “this ad is not relevant to me” and “this ad is offensive.”

Because 99% of them are not relevant to me, but they could be relevant to someone else.

I want to label all of them offensive because they’re offensive to me, but I admit I may be slightly oversensitive given that I’ve gone to paying attention to virtually none of it to all of it in the span of a day.

The internet is a powerful tool, it provides so much good to everyone who has access to it, but it also provides a lot of bad (and/or useless) information. Anyone can say anything they want and they can get away with it.

What does this mean for the disability community?

It means that ableism can come from anywhere, obviously.

It’s a good thing really. Not that ableism is ever a good thing but it gives advocates, like myself, talking points we might not have thought of if it wasn’t for things that came across our path that we didn’t agree with.

For every 1 ableist item we see we should come up with at least 2 disability items to highlight the positives of having a disability. The disability community may not have the money but we have the numbers, and more are joining the community every day.

For example, (and this is just one of the many examples obviously) the parents of the newly diagnosed child should be able to sit down at their computer and be able to find the good things about being disabled alongside some of the harsh realities. Because being disabled isn’t all doom and gloom, sadness and pity, or worthlessness or being less than.

Would I like ableism to be a thing of the past? Absolutely, but the world is full of ignorant people so, although it may seem like a pipedream now that doesn’t mean it has to be one in the future.

I’ll keep doing my part in small ways, big ways, and every way in-between.

Now about the internet thinking I can speak Spanish thing………

Blogging Against Disablism Day, May 1st 2016