Archive for the ‘disability’ Category

Taken Over by the Fear

February 14, 2010

I have come to the conclusion that people who have not had a lot of exposure to disability are not just ignorant. I think that they are afraid of the disabled, and not in the way other people have said. I don’t think it’s a fear of the unknown or the ‘that could be me’. I think it’s because of the token factor.

Let me explain. In media that attempts to portray both the abled and the disabled, often there is one disabled character. The “token”. Except there isn’t just one person, one type of disability in the real world. There are as many, if not more, different types of the disabled than the abled. We work through it in different ways, and have different needs. This scares people because it means that there is not one fix-all solution.

In my battles with various disability resources my mom is often saying: “they probably don’t have many cases like yours”, which is true. I’m a product of the generation just starting to, and starting to be able to, raise their disabled kids to have the same expectations as the non-disabled.  I need help to make that happen, but not the sort of help they are used to getting. I don’t need the PCA/note-taker/tuition sort of help. I need the luggage-shipping/laptop/application fees sort. Unlike some of the others with disabilities, usually not physical, I cannot work and attend school. At the same time, undergraduate is not my end goal. I have more than that to give.

There it is. What I have to give. People with disabilities have things to give, the same as the non-disabled. The trouble is, the support to do these things is different for each person. A non-disabled artist can wait tables and then go home at night to create. Then they become a success story, or they fail and find a different route. But if you don’t have the physical stamina to do both, then you cannot do either. Social Security does not give the money per month that a minimum-wage, part-time job does. Even with Medicare, that’s not enough for a dreaming twenty-something, and so without finding their own way the disabled are not allowed this path. Oh no! one shouts. Taxpayer money should not go to people who may not succeed!

Maybe that’s it, then. Maybe many of the abled are afraid of taking a chance. The disabled take chances almost every day. Eventually you grow numb to the fear, even if you’re always afraid. And, if you’re like me, you don’t accept the contingency plan they give you, the one that is based around what you cannot do. You alter the one based around what you can do, combining what is possible and what is practical. You do this, in the hopes that one day they will stop being afraid and then you will be able to do what is imaginable. You tolerate the college disability coordinators who are better with learning disabilities than physical ones, and the doctors who are used to the ones who don’t talk back. You encourage the next generation, because eventually hope will win out.

And I’m not saying every disabled person has a talent for the arts, or is above average in skill. Not every abled person is, nor does every abled artist have the chance that they could have. However, they should have that chance, or be allowed to do what they can succeed in doing without question. That’s all I’m hoping for.

My mom says I’m not practical, but when I jump I usually land on solid ground. Maybe this dream will too.


Mobility vs. Independence

August 10, 2009

I’ve decided that this is something that you may only think about when your mobility is hindered and you are already also mindful of disability in general. Perhaps not, but I know my view is skewed by both.

Today the doctor rebandaged my leg, complete with splint. After a Must Get it Off panic attack last night left me hating the splint I was not pleased. I’m moving around pretty well, can get up and down the stairs, but cannot be my bouncy self and I do NOT like it. Part of my dislike may initiate from my knowledge that I am potentially messing up my gait with the heavy limp, combined with my dislike of the inherent reliance woven into the use of a wheelchair by a girl with weak upper-body muscles.

This duality has got me thinking. My predicament should only last another week at most; I should have the stitches out before I return to school, but it gives me a different view on a question I’ve often pondered. Wheelchair use by those who could have limited mobility with mobility-aids. To me the question used to be a no-brainer. Use the most easily-wielded aid to gain independence and avoid the difficulties of the life of a chair-user.

Yet, with the advent of more user-friendly electric chairs I often see those who have mobility opting for the chair. This is a different level from the dependence that the traditional chair implies; there is more mobility involved with the electric chair as well, but there is still a certain degree of dependence that even a walker or crutches do not lead to.

It’s all up to personal choice, of course. Crutches vs. Walker vs. Chair, and what one’s body can tolerate for any period of time. I’ve certainly opted for chair instead of cane a few times this weekend, but I have healing to take into consideration and stitches that must be out before the 20th August. Still, for one who has always prized both mobility and independence to have both limited is eye-opening.

Presenting Myself

August 8, 2009

I was going to update immediately after my surgery,  but there was not much to say except “doing better than expected “and “ow”. This weekend, though, my friend Sarah and I drove over to Ft Walton where Mom’s conference was. I was presenting the “this is what happens when a child is mainstreamed” story and Sarah was my helper, pushing the wheelchair and such. Having her tagging along with me made me realize some things about perspective.

For her it was the first time hearing some of my story, including the difficulty I was going through when we first became friends. She was one of the first people from high school who I remember really asking for help after the eye surgery and leg infection that categorized my junior year. We had just become friends over the few days of the Florida State Thespian Festival in Tampa and she just happened to be near me in a crowd when I really needed an arm to hold onto. The rest is kind of history. She went to boarding school and we just kept in touch. We see each other every Thanksgiving, Christmas and summer and I’ve gone up to NYU to visit her a few times.

My point is this: she’s never known me not needing a little help, or cared, which is why it made it easier this weekend when she was helping with the chair. If I need it at school in a few weeks it might be harder because they’ve never really seen the worst. Perspective.

My leg seems to be doing pretty well. A little painful in places, with a massive splint, but he should reassess and hopefully bandage it more loosely on Monday. Here’s hoping.


August 4, 2009

Growing up I used to say that if I could write a book like Ella Enchanted I would be happy. Now I still love the book and audiobook, but I don’t write fantasy. The goal is there, to be able to craft language in that way, but the world building isn’t me. It’s funny when you look at my bookshelves; I read so much fantasy and historical fiction, but I write neither.

Rereading I Capture The Castle, I think my goal has shifted. To write with the elegant grasp on prose that Dodie Smith grasps in a timeless novel that way…. well it would be amazing. I’m not sure I will ever get there, nor be able to create a scene like that magical Midsummer’s Eve that Cassandra spends with Simon, but it would be amazing.

I spent this morning lying in bed reading the book; not unlike the first time I read it lying in the hotel room at the Hilton Orly in Paris. Now the book is coupled with a longing for London that every glimpse of the city in media gives me, but also a longing for love. Though Cassandra does not end up in the happily married way of Eliza Bennett, she gets love, and magic, and beauty. This summer, when so much is on the cusp, even the yellow light of my bedroom against the pink of my quilt seemed anticipatory. Funny how that can be in a moment of doing nothing.

Well, time to go get lunch. I think we’re getting sushi, last-meal style before tomorrow’s surgery. This moment is odd…. Today I can move freely and tomorrow I won’t be able to. Still, a month from now a lot will as  be better. Or, hopefully.

I’m fighting pessimism a little, because it is rare that things go just as planned, and my mother’s worries seep into my conscious. The hope of youth, though, is everlasting and…

After the surgery on my right foot at a later date there will be boots and Converse hightops calling my name!!!!!

Charting the Course

August 3, 2009

Today my mother and I set off for Ft. Walton. I had knitting in hand, so I was set, right?

Except I didn’t have my chart. Quite the conundrum. Do you assume that you know it well enough to just keep going? A sleeve with three repeats done says you do. But is it worth the frogging if you mess it up?

In the end, I knit for a little ways, just as far as I was sure and then read. I’m rereading I Capture The Castle, because it’s not summer if I don’t.

In disability news, I’m having surgery Wednesday to do something about the excess skin on my ankles. Just the left this time, but the right at either Christmas or next summer. I am SO excited. This means high-tops and boots which I have not been able to wear since the lymph-node injuring accident of 2000. Then I was eleven and not interested in such paragons of fashion. I am scared, a tad, because I always am about surgery, but hopefully all will be well.

I think I may attempt Blog a Day in September. Not that I have, you know, scholarships to apply for or recruitment to deal with….

surgery and stuff

July 10, 2009

I’m having surgery next month to remove some excess skin from my left leg. Both legs need it, but with two big commitments within weeks of each other and classes starting I can’t afford the downtime to do both at once. It’s a balancing act.

It’s taking care of body stuff as well as real stuff. It’s knowing how much help to as for to succeed well on your own. It’s ten minutes spent bandaging and ten on hair and make-up.

And it’s trying to figure out how much of you it makes up.

Someone at a meeting for a governmental disability funding issue asked me this week “how” my career choice was based on my disability. And, it isn’t.

Except, if I wasn’t disabled would I be aspiring to be… a travel writer? An actress? Would it be different?

Well, yeah. Because I’d be different. I wouldn’t have been sick as much as a kid, so maybe I wouldn’t have read as much. Maybe I’d be more socially awkward, because I could have disappeared more easily. Maybe I’d be less self-conscious.

But maybe not. This is what i have, this is what I’m working with. So no, my career choice is not based on my disability. But it plays a part, because it’s a part of me.

Not the whole. And I hope it never is the whole because then I have failed
Disability is a balancing act. It’s knowing how much to ask for, help wise, to make you able to succeed on your own. It’s taking care of bod

Just So You Know

July 7, 2009

I’m applying for a Rhodes scholarship. It’s kind of a lark, because I have not dewormed cats in the Congo so would never get it, but I’m still a tad hopeful that I’ll get an interview.

My problem, while obsessively writing and rewriting my personal statement, has been the fact that the Rhodes has a specification that applicants be “able to lead the vigorous life” that will lead to being an asset to the international community.

Did I mention that my line of narrative for my statement has to do with disability disclosure?

Reasonably I know that i have already shown the ability to handle a vigorous lifestyle with the backpacking and the refusual to let my disabiltiy get in the way. Part of me wishes though that I was still acting under the “tell them later” philosophy instead of writing a statement about why I no longer do that.

Then, if my disability is a reason for my not being considered it just shows what I am traveling to demonstrate and writing against anyway.

Halloween Carnivals

October 21, 2007

This past month I’ve volunteered at two carnivals in neighborhoods in Atlanta.One wasn’t really for Halloween; it was a neighborhood bake and craft fair in the area where the charter school that my school has an affiliation with is.

I don’t know what income the housing area is, but my guess would be low. The fair consisted of several rented carnival games, with dollar store prizes. The food was homemade by the neighbors and varied in quality. It was good, but it made me miss festivals at home with my brother catering with his huge grill. Still, the kids there had fun and the neighborhood had a good time.

Today I volunteered at the Juvenile Diabetes Research Foundation of Georgia’s Halloween carnival at Marist. It was obviously better sponsored, prizes from TV stations (we had to remove the “So Sexy—Court TV” wristbands from the prize options!), Mellow Mushroom pizza, ice cream (no sugar added).

I don’t even think it was a higher budget thing, because my guess is that much of it was donated, although the insulin pump display people may have paid for their tables. It was just interesting to see the difference between the two carnivals, both of which were for very good causes with very cute kids but in very different neighborhoods with extremely different demographics.

I have to say, I have a great empathy for the kids with diabetes. My sorority sister who has it (the instigator of this project) and I often commiserate about the woes of healthcare problems, but she was diagnosed with diabetes at the age of eleven, so she wasn’t affected as a young child. But these kids know their health problems as well as I knew not to play rough at recess. To watch out for stairs.

But they’ll make mistakes. Eat the wrong thing. Fall down. And their moms will learn that they can’t always look out for them. And they’ll one day, maybe at eighteen in a dorm room somewhere, have the realization that while it may never go away there will come a time when managing it becomes second nature and things will be okay.

And my heart breaks in the same way it does when i speak to the mother of the little boy who has Dermatosparaxis, because I wish they didn’t have to do it.  But, then again, maybe they too will have that little bit of pride that comes from learning how to better take care of a body that attempts to foil your every move, you know?

This blog started out being about Atlanta neighborhoods and demographics, and it turned into disability-ness. What do you expect from the gimp kid? 😀

FYI, my cough’s much better and my arm is almost better. Still swollen, but the lack of pain sings the praises of the antibiotic! Woo!

Donate, Please

September 2, 2007

Over at Tangled Fingers Diary, she’s hosting a donate button for the Ehlers Danlos National Foundation. Her sister was diagnosed with EDS type 4. For every $5 you donate you will be eligible for a drawing for 5 skeins of Jaeger Roma.

This means a lot to me, because as many of you know, I have Ehlers Danlos type 7c (aka Dermatosparaxis). Ehlers Danlos itself is incredibly rare, and my type exceedingly so. I have the EDNF to thank, though, for the contact I have with a mother of a ten year old boy who also has Dermatosparaxis.

So, a very worthy cause, in my opinion.

Eight Things

May 21, 2007

I’m pretending like Purlesence tagged me cuz I wanna do it 😀

1. I’m adopted. My parents used to take foster babies, and I was their forty-first. My mother says when she first saw me her thought was: how am I going to tell my husband that I want to keep this baby? A year later (a year and two months, actually) my adoption was finalized. I’ve always known that I was special and chosen. I always thought that when I was eighteen it would be a big deal to get my folder from Children’s Home Society. I still haven’t done it, even though I want to.

2. If a year can have a theme, I think the theme of my first year of college was: people and things are never going to be what you expect them to be. It’s not necessarily a bad thing. It’s just true. First impressions are not to be built on, because you will undoubtedly think people are different from who they are and be disppointed. Also, even when you think you know someone well, you may not. Life’s like that and people are like that.

3. I feel like I’m still waiting for things to happen. I’m fairly happy with where I am, but I want to know where my life is going. I want so much out of life, and i’m afraid to never get it. Afraid that I’m wasting time. I’m eighteen, already. When did that happen?

4. Knitting is one, if not the only, craft that I can do. I have horrible fine motor skills and had ages of occupational therapy.

5. My childhood was filled with work with disability rights because of my mom’s job, and I claim that I don’t want to have anything to do with that when I grow up. Except that I do the Youth Leadership forum nearly every summer, and in my novels someone always seems to have some sort of disability. While my best friend wants to be a poli-sci major I feel like I’m fighting the battle for awareness. from a different side.

6. I’m eighteen. I’ve never been kissed. That scares me.

7. I’m very close to my mom. I don’t know where I’ll be if I ever lose her. Maybe it comes from growing up needing someone more than most kids, but I really do rely on her and love her very much.

8. My disability is called Dermatosparaxis, it’s a form Ehlers Danlos causing easy bruising and tearing of the skin, soft tissue infections and low vision. It’s a part of me, like my blonde hair, but also how I define myself some times. I’m a writer, a student, a knitter and I have a disability.