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What It’s Like: The Invisible Generation on life with disabilities, continued

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This is a continuation of What It’s Like: The Invisible Generation on life with disabilities. Part one can be read here. The full video discussion can be viewed below.

SD: Samantha Davis
SB: Serjio Brereda
KI: Kim Ivory
MK: Mohammad Khan

SD: A lot of people don’t realize what resources are available to them. When I got to UH, I really was not expecting that much. And then I went to CSD and I was like, “Wow. This is so much better than undergrad! They have so much.” So that was a nice surprise. How do you feel about CSD?

MK: Because of my difficulties with my hand, I get time and a half to take exams. The only way this time and a half can be administered is the instructor sends the exam to CSD. They have their own testing facilities there, where students are sat down and monitored or proctored and they give us the time and a half. But one problem I’ve faced with this set-up was if I had any doubts about the exam I’m taking – if I have a question, if I need a clarification – there’s nothing I can do.

KI: I’m glad you brought that up. I face that all the time when I have to take my tests in the CSD. I have a question. There’s nobody there. It’s so frustrating! God forbid, you end up missing that question. Or even if they make a mistake on the test and they announce it in class – you’re not there to hear that instruction. You’re sitting there and you’re like, “Is that supposed to be there?” But you don’t know; he didn’t explain it to you. Oh my goodness. I battle that all the time. People see it like, “Oh, you get an extra hour and a half? Man, you’re lucky. I wish I could get more time. That’s not fair.” I’m like, “Are you serious? Look at my hands. Look at how long it takes me to write. It’s not even a mental thing, honestly.

SB: If you come to them (the professors) first and speak what you need, most of the time they will provide reasonable accommodations that you need.

MK: Reasonable being in quotations there.

KI: Some people don’t even like to deal with CSD at all. They prefer to just take it in their office. There’s a lot of things going on, but CSD definitely makes things a little bit better. They do.

 

SD: I haven’t had as many issues with professors as I’ve had with students, which is strange, I think.

MK: As far as professors go, the best professors are the ones – in my opinion – who give you the accommodations you need, but don’t treat you any differently than the other students. They expect the same of you as they expect out of all the other students in the class. I don’t want a pity party. I don’t want a pity grade. Sometimes I may be wanting an easier time, but in truth I don’t feel I’ve worked for that grade if I get something that a classmate who has done the same amount of work has not gotten. I think the best professors are the ones who treat us at par with the other students.

KI: So they consider your challenges but they don’t lower their expectations.

 

SD: In terms of professors and classes, one of the things that bothered me the most – if I had to miss class or I was late – I felt a whole lot of guilt. I knew I couldn’t control the situation. I had to roll with it, but a lot of times I would really beat myself up over it. Do you ever deal with that guilt?

MK: Absolutely, absolutely. I’ve had problems at school because I get involved in way too many activities. I want to do them and then I can’t do them. Then I go into this panic phase and I start dropping things all around. So yeah, I know what you’re talking about. I sign up for more than I’m actually capable of keeping up with. I heard this saying the other day: “Don’t make promises when you are happy and don’t dole out punishments when you’re angry.” Friends would ask me to hang out, to go out and do things, or to join clubs and I’d sign up. I’d be all excited and then later I’d realize, “No. There’s no way I can meet all these deadlines.” This time around it has to be very focused; education, the classes have to be the primary concern. Everything else can be on the side. Once I’ve completed this, then maybe I can take something else on the side. Hopefully, activities like Adaptive Athletics will keep me focused on campus and keep me busy enough that I won’t sign up for other things on the side.

KI: I used to have that guilty feeling. When I first got back into school after my accident, I wanted to do everything and be a part of everything.

MK: I know how that feels. I know that feeling.

KI: I didn’t want to be left out at all. So I was in all these clubs. I was Vice President. I was doing all these things. Then I realized – I’m not sleeping as much as I should be, I’m not working out, like with my standing, the things that I need to be doing and I’m limiting that part of my life. I was being late all the time. I wasn’t being professional. I realized I can’t do everything that I wanted to do. I have to look at what I can do – know my limitations. Now, I don’t have that guilty feeling anymore. I look at things and I admire other people for being able to do everything but I know what I can do. I have to look at things and say, “That’s a great idea  – maybe in the future. Maybe later.”  I can handle what I can handle and I’m okay with that.

SB: Everyone has to have some sort of time management. For us who have disabilities, we have to accommodate our time management in a way.

 

SD: What are other lessons you have learned?

MK: Give yourself enough time to get to your appointments. But see – that’s something everybody has to deal with – it’s not tied down just to disability. We’re just like everybody else. That’s what I’m saying; we go through the same situations.

KI: I have days where I feel like I’m going to get over the staring – when I’m out in public and people just stare – but then there’s others where I’m just like, “Really? Do you have to stare at me today?” That’s another challenge. Have you ever been out in public with someone and they just talk to that person (that you’re with) and they don’t look at you?

SB: I’ve had that. I remember going to a restaurant with a friend of mine and we had a waiter who just talked to my friend and did not acknowledge what I wanted or needed. I was really like, “Wow.”

 

SD: You see a wheelchair and that doesn’t really define what that person is going through or what their condition is, but sometimes people jump to conclusions and think, “Oh, that person must not operate on the same mental level as I do.” There’s a lot of things that able-bodied people don’t understand simply because they haven’t come in contact with it their whole lives.

KI: Except for like Grandma in her wheelchair. When you think of wheelchairs, you mostly think of older people. They see younger people and they’re like, “Oh my gosh.”

 

SD: And they always say, “You’re too young to be in a wheelchair.” It bothers me because all sorts of people have all sorts of different issues.

MK: Thank you!

KI: It’s funny because I have to be really careful to not get really passionate and annoyed with that person. That may be their first time asking that question but to you, it’s like your thirtieth time. It’s like that one person that you just lose it on.

MK: Like Samantha was saying, everybody has their unique situations, even with disabilities. Kim, you’re a C7. There are other people with spinal cord injuries who are much lower than that. What most people fail to recognize is that different spinal cord injuries at different levels don’t come with the same issues. There are some people who can’t be out in the sun long enough because they don’t sweat, and then somebody who might not have control over their fingers and might not be able to pick something up from the floor. So just because you have seen somebody in a wheelchair does not mean you know what everybody in a wheelchair is going through. Say five years ago you broke your foot and used a wheelchair for a week – that does not make you an expert on what life in a wheelchair is like. Before I got disabled – not to say that I didn’t care – but I didn’t think it necessary to understand what other people were going through. But now facing disability myself, is when my horizons have expanded. Disability – it comes back to the same thing: we are just like everybody else, the six billion people out there. We have the same complications, but it goes off like an offshoot on its own side like these are things that we deal with. At the same time, we may not be aware of things that other people are dealing with. Compassion, compassion, compassion – that should be key!

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