The Thread - How Proud Are You?
A DO-IT Scholar recently posed the following question within our Internet discussion forum. I will share with you some of the responses so that you can get a flavor of the many rich conversations the DO-IT community has online.
How many of you are proud of your disability? Are you comfortable talking about it?
DO-IT Ambassador: I don't think I would consider myself proud of my disability. Being visually impaired does have its frustrations. For example, I have to rely on a visual assistance at filling out forms if they are not in a format that allows me to complete them using my PC. In addition, I sometimes run into issues with transportation to certain places. This is especially a problem if the transit doesn't run frequently or I have to cross busy intersections to get to where I am going. I do, however, enjoy talking about my disability. I like to share my work experiences with others and tell about the adaptive equipment I use. In addition, I like to give technical advice to other visually impaired computer users.
DO-IT Mentor: I've gotten quite conceited about mine, which presently comes off as pride. I won't raise my disability, but if others do, I'll talk about it, hoping to move the conversation from myself to disability in society, and then to what brought the questioner and me together in the first place.
DO-IT Mentor: While I don't consider myself proud of my disability (severe hearing impairment), I am also not defensive of it. I try to use my disability as a springboard to advocate for others with disabilities of all types. So, in short, proud no, but using it productively, yes, and very willing to talk about it.
DO-IT Ambassador: I agree with the people that have responded: I am not proud. I get to sit on the side or in the grandstands while all my buddies are out playing football or basketball. It also has downfalls, like not getting invited places because my chair can't fit in a car. But, frankly, I don't care who knows what accommodations I get. I freely talk to people about my disability when they ask.
DO-IT Ambassador: I think there is a big difference in being "proud" and being "comfortable" with it. I am comfortable with mine for I do have it and must do work-arounds for it. But, I don't know how one would be proud of it. It is just a fact of life.
DO-IT Mentor: I think I am very comfortable with being a person with disability and I AM proud of being a member of the disability community, a rich, varied and outstanding bunch of people. I have always been strangely comfortable with being noticeable and find that if I just smile at the folks who stare, most smile back. I just got a new and pretty spiffy wheelchair with front casters that sparkle (yes, a 45 year old with a sporty chair!) and I can't believe all the fun comments I have gotten in the last few days. They make most people smile. That is a nice thing!
So, I don't know if I am proud to be different but I am certainly proud to be ME, and being me is being a round, short-statured lady in a spiffy chair!
Oh, and I am very open about talking about my disability, my chair, why I use a chair, well, just about anything. Chatty, I am!
DO-IT Pal: Are you nuts or something? I don't believe anyone is proud of their disability. I have cerebral palsy and I am not proud of it. I'm proud of what I can do.
DO-IT Pal: I am proud of who I am and I have accomplished a lot in my life. So the disability doesn't matter, it's the heart!! I don't get asked much by many people about my disability but when they do, I am open and brutally honest. It's fun to read people's responses. Good topic!!
DO-IT Ambassador: I'm not sure I'd say I'm "proud" of my disability, but I do accept and embrace it as part of who I am. There are many experiences I've had throughout my lifetime, that have shaped my personality and identity, that I would not have had if I was not disabled. I do cringe whenever I hear talk of things like "preventing birth defects," because I don't think I would want to have been "prevented." (Sure, I would have still been born, but sans disability, I would not be the same person.) I don't think of my disability as something defective that needs to be fixed; to me it's just like a birthmark or odd-colored eyes... just something rare and different about me.
As far as my comfort talking about it, that depends on the attitude of the person I'm talking to. If the person is simply curious about it or how I get things done, then yeah, I can go on all day... lol! But if someone starts talking about how sad it is, or what could be done to "fix" me, I shut down the conversation pretty quickly.
DO-IT Mentor: That's an interesting question. I would not say I am proud of my disability, per se. I am proud of myself and my accomplishments. I know I had a steeper climb because of my vision loss. But I would love the world to learn that, with today's tools, I am really not all that different. Just as someone with correctable vision is equalized by glasses I am equalized by a talking computer, etc.
And yes, I am only uncomfortable talking about my disability when someone asking me questions asks really ignorant questions. I'm pretty tolerant, so they have to be really insensitive or invasive.
DO-IT Mentor: I am a brother, a son, a friend, a boss, a co-worker, a neighbor, a citizen, a Mariners fan, a Husky fan, a UW graduate and many other things, and... a person with a disAbility. I hope I conduct myself in such a manner that I can be proud of all of me.
And yes, right now, today, the Husky fan part of me is doin' pretty good!
If I were to rank the above list in importance in my life, in what I define myself by, well... being a person with a disAbility would not be in the top 5. I am not saying having arthritis doesn't play a role in my life, it certainly does. All I am saying is we get to choose what's important to us and the fact that I've had arthritis since age 2 (and all the related issues) just isn't it. I'd much rather be known as a good son, brother, friend, boss and co-worker, citizen, etc... I give the disAbility as much time and effort as it needs to allow me to excel in the other areas I listed—and that's it!
Yes, I can-and have-talked about my disAbility. I've done awareness trainings for everyone from corporate execs to grade schoolers.
DO-IT Mentor: First, I have to say what an AWESOME question! I sometimes wonder the same thing...
My answer: Heck yeah, I'm proud! I am me, and part of being me is having a disability. I won't lie; sometimes it is hard, but nothing to be ashamed of. I think disability should be viewed as a difference (neutral connotation), instead of as an abnormality (negative connotation).
I equate disability to race. (Try it... it's interesting!) Being a minority (person of color or person with disability/ies) is not always easy. You may have to deal with discrimination or even just being stereotyped. However, on the flipside, you are part of a community, a culture, that is unique and supportive. (Disability culture is small, but growing. Examples: deaf culture, disability athletics, disability comedy.) I think it will continue to grow as people with disabilities gain more access to resources.
Along with that point, being a member of a minority group can give you more empathy. You know what it is like to be stereotyped, and you can more easily understand others' difficulties. You can share what you know to better society.
Some thoughts about oppression: historically, people of color have been considered subhuman, right? Well, everyone thinking something bad about you can lead to you feeling bad about yourself. Society's values and perceptions will shape your perception of yourself. For people of color, societal values can lead to internalized racism. For people with disabilities, they can lead to internalized ablism. People have disabilities, not "suffer" from them. (I'm not saying that having [a] disability/ies is easy or not hard sometimes.) People, however, DO suffer from ablism... all people, with or without disabilities. Ablism fosters thinking that eventually leads to denial of access of resources.
DO-IT Pal: I don't know if I'd necessarily say I'm proud of my CP, though it does bring me some advantage which I make sure to milk to the fullest (preferred seating locations for concerts-I've seen Ricky Martin and Bon Jovi from the front row), the fact that it got my favorite celebrity to reply to my letter, the fact that I can roll into any grocery store and get the first employee I see and nicely smile at to be my gopher and get me everything I need within 5-10 minutes, the fact that when I'm sans wheelchair I can by-pass most any line, the fact that my scooter goes faster and doesn't get tired as fast as my friends when we're walking somewhere, discounts at some theme parks, discounts on Broadway tickets, and invitations to some really cool Disability-exclusive events (which often come with free stuff, I love free stuff). So yes, I'm proud that I can get all that with a little painless spaz moment here and there. I'm pretty open when it comes to talking about my disability.
DO-IT Scholar: You'll be surprised how many people are proud of their disabilities regardless the obstacles they face with it.
DO-IT Mentor: I think I'll play a little devil's advocate here. I am not sure I understand what it means to be proud of one's disability(ies). I am definitely not ashamed that my eyes don't work so hot... but I can't say I'm proud that they don't... perhaps you mean you are proud of yourself as a person with a disability. Can you explain?
Once when I was part of a diversity panel, I tried to say what I thought the differences were between other minorities and people with disabilities:
- In the case of people of color, etc., the differences people perceive between us is pretty much imaginary. A prejudiced person thinks a woman is not as smart as a man. In the case of disability, the differences are often actual. The problem is what the prejudiced person thinks that means. I can't see so well... the important thing is does that present an insurmountable barrier to self-determination and achievement? The prejudiced or at least ill-informed person may say "yes." I know that's not true.
- Disability is one minority everyone is eligible to join and probably will in one way or another. People don't just change races, and few change genders, etc.
- Disability is, in my opinion, a matter of mechanics. I'm missing a bunch of light receptors in my retinas. The challenge is to find mechanics that make them unnecessary. I have done that and then some.
The point I'm making is, I guess, that pride is less of the issue than confidence and resourcefulness. I am not proud of defective eyes, but I am confident that they don't stop me from doing what I want... for the most part.
DO-IT Mentor: Nice answer, I struggled to find one myself... wrote, deleted, wrote...
To me the disAbility is very specific physical (could be mental for others) condition that creates a series of functional limitations. That (arthritis) is to me, not something to be proud of. It's not that I am not proud of it as much as I don't think a "very specific physical (could be mental for others) condition that creates a series of functional limitations" is something one can or cannot be proud of. How I react to that, how I deal with it and how I deal with society's perceptions (and resulting actions)-that's what I can or cannot be proud of.
Here's an analogy. Computers. People spend way too much time talking about whether or not computers are evil and bad for society. I say they're neither-their value is neutral, it's how people use computers that defines their value.
As far as the race/disAbility issue, I think the answer needs to be context specific. 99% of the time people ask the question it's to answer the question, or in relation to the issue of, "Ways in which we keep getting hosed by those with power"—or something to that effect. In this context I believe there is no real difference. The problem both groups face is that others look at us and make false judgments about any number of things (knowledge, skill, abilities, value, etc.). The judgments are usually false because they exaggerate or inaccurately judge what effect our race/disAbility, etc. have on reality.
DO-IT Mentor: I think everyone's definition of pride is unique, as some people identify themselves as being a part of the Deaf community.
The Deaf community functions in many ways like other minority groups. But unlike other minority groups, which are defined by racial or ethnic boundaries, the American Deaf Community is a linguistic minority group.
Their language is American Sign Language (ASL). They often celebrate and cherish their deafness because it affords them the unique privilege of sharing a common history and language.
DO-IT Pal: I agree with the people who have posted on the doitchat list. I don't see that having a disability (dyslexia) is something to be proud of, but at the same time, it is nothing to be ashamed of. It is a fact of life. I am not proud that I have blue eyes, I just do. As for the second part of your question, yes, I am comfortable talking about my disability. It is easier to be proactive than to try to explain things when I need something right now or have people speculating about why I carry a laptop around at school. It is a fact of life, and I address it as one.
DO-IT Mentor: Thanks, that clarifies things. It has always struck me that with certain exceptions of course, when people who are deaf and ASL literate are together, they are not really "disabled." That probably says something about what actually does the disabling... the environment, the external.
I can't say that about being with other blind people... although I may value them and many aspects of our common experience, we are just as disabled together as apart.
However, on the Internet I feel I can relate to your experience. When I am online, I am on the proverbial level playing field.
Do others have observations on these issues?
DO-IT Ambassador: I agree the Internet can level the playing field, provided people with disabilities have access to computers and the Internet. It has been my experience that it depends on your own preferences, comfort level with yourself and others, and, to some degree, the actual nature and severity of disabilities one has. (In many ways, this does not matter, but there can be misunderstandings if health issues are not disclosed.) It also assumes some degree of understanding of Internet etiquette, which even the general population can struggle with.
DO-IT Mentor: You make a good point. The Internet does level the playing field to a certain extent, but then other issues come into play.
Some people are not able to express themselves very well in written words, but can do so vocally (sometimes it's just grammar, other times it can be their comfort with writing/typing). We can perceive people differently based upon how well they are able to communicate... I know that on a message board I frequently use there are several people who write such confusing posts that I find myself skipping their posts. I feel a bit of guilt for not taking into account what they've added, but I just don't have the time to decipher their messages! I am conscious of this bias, though, so I won't let myself judge him based on this, I just try to avoid the conversations that he posts a lot in. ;) A certain amount of slang is fine (I use it myself) but when a message is riddled with horrible punctuation, spelling, and grammar mistakes it can make the message illegible. In a casual environment one isn't expected to write a picture-perfect document, but it does help to express yourself when you use basic grammar rules.
Of course this type of issue is present w/out the Internet, people who can't communicate well in person will have the same effect on you (making you not want to talk to them). I have a friend who can express himself very well vocally, but just can't write (and he knows it and tries to avoid those type of situations).
DO-IT Ambassador: I don't personally see my disability in and of itself as something to be either proud or ashamed of. It's just the way things are. In terms of the ways I've worked to adapt, and overcome it as a major impediment to success, I'm very proud of that. As far being comfortable talking about it, absolutely.
DO-IT Pal: Interesting points... I think the problem with creating one single community is the broadness of the definition of disability and the differences in experience among different types of people with disabilities. For example, when it comes to accommodating a visual impairment, I am as ignorant as your average able-bodied person. The last thing I think about when drafting documents is that maybe someone somewhere can't read them very well because visual impairment is not a part of my own experience (okay I'm mildly nearsighted and have glasses but that's not considered to be a visual impairment under the ADA). I also can't comprehend why my friend with a learning disability has trouble with things that to me are very simple...like reading a paragraph that's not been double spaced.
I didn't really consider myself to be a PWD until I started working at a summer camp for kids with disabilities. I saw that I could use that factor to my advantage and it really helped me to get the kids to comply with whatever I told them to do and also to leverage it so that they have a positive role model who they can identify with. I didn't see myself as a PWD before because I went to a school where many kids had learning difficulties as well as the more apparent physical disability, which kind of gave 12-year-old me the false assumption that most PWD were like my "dumb" classmates and not like me. So I really didn't want to be associated w/ having a disability because I had that negative connotation attached to it and I was a person of ability not to be confused with "those other people."
I spent the past summer interning at Booz Allen Hamilton (great place to work), and I was also a member of their Emerging Leaders Class of 2003 which is a leadership development/internship program for students with disabilities. It was great to meet other PWDs who are just like me. We instantly bonded as soon as we met at the conference and literally were inseparable all 3 days we were together. Meeting Andy Imparato and John Hockenberry was also great, both men are huge inspirations because they have made amazing careers for themselves and create both actively and passively more opportunities for others like them to follow in their footsteps. Check out Emerging-leaders.com-it's great!
So I think community-building needs to have pride as its foundation. To form a truly solid movement like those formed by racial minorities, PWD need to band together because we realize the similarities between us and not stress the differences.
DO-IT Scholar: I'm also not proud of my disability (cerebral palsy), I love being able to do what I can do on my own. I know that God made me who I am for a reason, that he has plans for me in this world, and that he will use me where he wants!
DO-IT Scholar: I don't know if I'm necessarily proud of my disabilities vision / physical / seizures. I mean I just have them and having them has shaped my personality and my life in general. I kind of like having disabilities because I get to use some cool adaptive technology. In the case of taking the pill to make my disabilities go away, I don't think I would take it because taking my disabilities away from me might make me less me and less unique. I feel I was given these disabilities for some reason or another-maybe to help someone down the road or something. All I know is that having these disabilities has shaped my life and made me friends that I wouldn't have made without them.
DO-IT Scholar: This is a great question! I have to say that I do feel comfortable about my disability because I am a human being like everyone else. I am hard of hearing. I have 80% hearing loss in both ears. The only time it is hard for me to talk about my disability is when I meet people for the first time because they would ask, "What's that in your ears?" I'll get quiet and not say much. Whenever I wear my hair down, no one notices. But when I have it in a bun or ponytail, some people ask what's that? It pushes my buttons sometimes. But, it always seems that they have to know. What I really hate is when little kids will stare at my ears and touch them and question me. Sometimes I will tell them and sometimes I don't. Most of the time I'm open minded with them. It's just the age group that can be a pain.
DO-IT Mentor: As a spina bifida patient (birth defect in the lower spine) of 77 years, I have been reading your comments on the question, "Am I proud of being disabled?" No I am not. I am proud of what little I have accomplished in my life. Your comments have helped me come out of my cave. I have some strong thoughts on the question. Maybe I have been in denial all these years.
DO-IT Mentor: Seems to me the experience of disability and how it is regarded has changed a great deal in recent years. That alone is an adjustment to be proud of. A related question... What accomplishments are you proudest of and why? How did your disability play a role? (For example, change your life plan or make reaching goals more challenging or rewarding?)
DO-IT Ambassador: Hi! Well, I'm proud to be me! I've always wanted to make a difference in the world, and I think my disability gives me the ABILITY to make a difference in people's lives. I'm always very comfortable talking about it and I think it shows to the people I am telling.
DO-IT Ambassador: I wouldn't say I'm proud of my disability, after all, it's a royal pain sometimes and can make for embarrassing situations. But it's also a part of me like the color of my eyes. It would be silly to be ashamed of it and even sillier to be embarrassed to talk about it since in my case it is so visible.
DO-IT Ambassador: I am definitely not "proud" of my disability, I don't know how anyone could say that. Although people like myself are used to their disability and have accepted it as part of them, I am sure they would rather be normal-I certainly would rather be. I am not ashamed of it either, but I don't flaunt it-that would be ridiculous. Disabilities are something we would rather not have given a choice.
DO-IT Ambassador: I don't know if there is any such thing as pride of disabilities. All we can do is accept it as part of who we are. We don't necessarily have to like it, but we do have to accept it in order to live with it effectively. My favorite commercial is for the Ronald McDonald house, and in it, they have a little girl, nine, ten, or eleven years old, talking about how she lost one of her legs to bone cancer. She has an artificial leg, and at the end of the commercial, she says, "So my leg has rotated around and backwards. So what? It's still me." I think that demonstrates the point very clearly.
Humble yourself and say, "I'm not perfect, but I'll be okay." Your disabilities are part of what makes you YOU. Take it from there.
DO-IT Mentor: I'm not proud of my disability per se, but I'm proud of what I have overcome despite my disability. I'm also proud of everything that makes me unique including my disability. I actually made a t-shirt a few months ago that says "Abnormal and proud of it" on the front and "Never confuse me with normal" on the back. I view everyone as abnormal. Everyone has their own abilities and I just have different abilities than others. My cerebral palsy is just something that makes me stand out (or sit out in my case).