We interrupt this period of finals-time under appreciation of this blog to bring you a story about a young woman who had a horrible experience with United’s disability policies. As a Cane Wielding Traveller I cannot imagine going through this. Please read and give her your support
I just returned from the city that never sleeps. One thing that shocked me as I visited with my friends was that the NYC subway is one of the least accessible I’ve seen.
Now, I was told all the buses are handicap-equipped and special cars run along the subway line for us gimps, but when I say it was less accessible than London, take note. I found myself longing for an escalator, and throwing my hip out a little from the stairs. There were elevators, yes, but not too visible and I would be dubious about using them. Just noticing.
I’m moving to Boston next year, so more observations from there, in additional to another summer in London
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.
I met a girl a few weekends ago named Danielle. Her brother was attending a scholarship competition at my university, and I approached because I know how hard Oglethorpe is to navigate with a disability. Danielle is in a wheelchair, you see.
She grinned. No. Everyone had been very helpful. They had to take some weird routes, and sketchy elevators, but she wants to apply to Ogle when she’s looking at schools. I was shocked, because when everyone else was assuming she was the student going through, I never did, because I thought that even my wonderful school might not be worth that fight. I’m drenched in the daily compromises I make in order to not make a fuss. I go up three flights of stairs when I have to, I never asked for the key to the service elevator. But if I did, if I had maybe people would have woken up just a little bit more.
Things are going well. Internship wheels are turning. Hyperbaric on my leg is going okay, though mornings are rough. Still love my school.
Oh. And I got into grad school at Simmons College in Boston. Not sure where I’ll go, but I have somewhere!
I wish I were The Doctor and could regenerate at the beginning of every semester. Instead I’m sitting here trying to coordinate VR, MARTA and my hyperbaric treatment to make my leg better. I still have a wound from the infection, you see.
I’m focused hard on my last semester, my internship, applying to grad school, but there’s still this to contend with. My doctor is very nice, and hyperbaric isn’t bad. Getting back and forth, plus classes, will be. I have a 9:30. My treatment will be 7-9. You do the math.
I’m holding onto hope, though. Three or four more weeks and it WILL be well. And things will be better, because there will be London and the future to look forward to. Traveling in time (one way) and space. Maybe a little like The Doctor after all.
Sorry to have been AWOL for so long. I had a MRSA infection in October and that ate up my semester, added to grad school applications and school in general. Things have been good: I took a new Sigma little sister, and my friends are wonderful, but it’s been rough.
Popping back in here for a follow up to here. You see, I live go to school in Atlanta, and Decatur is on the outskirts of that. In Decatur is Little Shop of Stories, and Little Shop of Stories won the Graveyard book contest to bring in Neil Gaiman. (Note: Did not go to party. Wanted to. Sorority annual party on same night. Roommate with car would not ditch)
Since in Dublin I got Katie’s book signed, we absolutely had to go together. Obviously. Even if Mom wanted me to go home Sunday. Psh. It’s Neil. So, we both called for tickets. I was on my way to the doctor’s (again), she was at work. Having missed the first ticket day being home for Thanksgiving, we were semi-frantic. I got my ticket in the cab on the way to the doctor; I got her text saying she had her ticket about half-an-hour later. She got overflow. I had a “golden ticket”!
We left school around three, first attempted to park by Little Shop, which was fail, because Agnes Scott is passed the questionable Dairy Queen. Decided to move the car (gimp girl’s face walking back to it? :-( ) We ended up parked not far from Presser Hall where the event was being held.
We had to separate then for seating. I entertained myself until six, people watching. Neil draws quite a diverse crowd. He spoke, which was excellent as always, and read from Odd and the Frost Giants, which I had seen, but not purchased and was really pleased with. Kid with a Crutch, woo! He also read from The Graveyard Book, which was a bit like having my audiobook come to life.
Then, signing. Having been at the 500+ people event at Chapters with him and Amanda, I wasn’t surprised per say by how long it took. Also very pleased that they got the families with children out early, very forward thinking. I was frustrated, a tad, because my other friend had Christmas Party Plans and I kept having to text with the “almost, but it’s going to be a while news”. Also, with Katie in overflow, to even make it I had to arrange to be picked up. This is a point where I have to point out that it would have made a tad more sense to be able to get two tickets. I understand the why of the “no” there, but for Pete’s sake, she had the car.
Then I got to meet Neil. He recognized me from Dublin, we chatted a bit. I gave him Neverwhere to sign because (oh, don’t you know?) I have an INTERNSHIP IN LONDON for the summer!! Still working on funding, but so excited! Also, Blueberry Girl as a gift.
And, this is a negative that’s purely personal,… My name is spelled wrong. It’s the Post-It that they gave you to personalize’s fault, and mine for not checking it, not Neil’s. Still, my name is not “Chelesy” it is “Chelsey”. So tad disappointing there. And I gave it to Roomie to take back through the line, but she must not have said anything. I wanted to take it back up, but I hated to hold up anyone else’s night. No doubt I’ll see him again.
Still, feels a bit like the latte cup that says Chesley.
At any rate, it was lovely lovely lovely seeing Neil again, and props to Little Shop for a wonderful night! Missed Amanda Palmer, of course, but she’s in Boston doing Amanda-y things.
The inundation of book reviews and lack of real entries? That’s because I’m doing nothing but reading and studying for the GRE….
That Summer has the hallmarks I love and find unique about Sarah Dessen’s books. Her protagonists aren’t extraordinary, and the world does not shift with their movements. Indeed, Haven’s life during That Summer is not too different from any teenager’s life during a particularly difficult summer. She does not fall in love, have tragedy occur or encounter significant loss or disease. Indeed, this changes in Dessen’s later books, so I enjoyed it here. Her writing style is also evident in this first novel, with a tendency to revel the past in long explanation, which though possibly frowned upon, I sort of like.
The thing is, I can definitely pin this as a first novel. Some plot points could use definite revision. For instance, Haven’s revelation about her sister’s ex-boyfriend was not a revelation to me. As soon as the second girl, the sister’s friend, was introduced I knew that something had happened between them. Having this girl be a member of her sister’s friends-group before the boyfriend might have made things a little bit more mysterious. Really, I wouldn’t have minded a relationship between Haven and Sumner. Nice and scandalous that, but I guess it doesn’t happen in real life….
On a side note, it was fun reading this thirteen years after its publication. No cellphones, no internet. Kids lazily wandering the neighborhood on a summer’s day, not engrossed by Gameboys. Oh how we change…
I read Shadow of the Giant in one day, after ordering it from my Amazon wishlist. As opposed to Shadow Puppets which I grabbed as soon as it came out I forgot about this one for a long time, though I did want to know what happened to Petra, Bean and their babies. I have to say that I was a little disappointed. The overall story is good, but I felt there was too much focus on the third-party characters who do not mean as much to the reader. Also, and though I have noticed in Card’s books before it was more here, there are huge chunks of plot-revealing dialogue that just get old. I also feel that sending Bean out to space just as he did Ender was a bit of a cop-out, though the one-missing child arc is interesting. I also predicted the Peter and Petra ending during the first chapter of the book. I feel like Card is stretching these out unnecessarily, to be honest, as a fan of the Ender’s Game/Shadow books since I was fourteen I kind of wish he would stop and leave us with the glory that is the first few books.
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.
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.