The Thread: Speak Up...Just DO-IT!

Sheryl Burgstahler, Ph.D.

Scholar Michael at the computer lab.

Many lively discussions appear on DO-IT electronic mail lists. The following excerpts are a small sample of the messages that were part of a discussion that began with the following message posted by Eric, a DO-IT Ambassador who is blind and joined the program as a Scholar in 1993.

Hi all, I would like both students and mentors to comment on this issue. It seems as though people make a lot of false assumptions about the disabled. For example, they assume that just because someone is visually impaired means that they are not able to get around on their own. I have had this happen to me many times on the roads of town. Someone will tell me where to go or else get hold of me without talking at all and I don't have any idea who they are or where they are taking me. I think this is because they are assuming that I don't know where I am going just because I can't see. Do you all have the same problem? Do people make similar assumptions about other disabilities? Thanks. (Eric)
Yes, that happens to me all the time, too. I assume that people are just trying to help. Their reasons are probably not always the same. People, for instance, tell me when it is ok to cross the street. Some may think I can't do it without their help. Others may just think that they might as well tell me the light is green since they happen to be there. (Sort of in the same manner in which someone might be nice and help someone else carry heavy shopping bags up the steps-not because they think the other person can't do it, but just because they want to help.") (Mentor who is blind)
On my way into the bank, I had to walk across a parking lot where a truck was idling. So, I stopped and waited to see if the truck would move. A man walked up to me and asked me if I needed help. I told him why I was waiting, and that I wanted to go into the bank. He asked whether he could take my hand, and I replied that I'd take his arm. He said, "Good job. Once I did that with a woman and she hit me, so now I always ask first." So, I was able to show this person that he handled the situation correctly. ...Anyway, I don't mind people asking if they can help, as long as they don't grab me, or order me around, and if they can take "No, thanks, I'm fine" for an answer. (Mentor who is blind)
...I once got off a plane in Souix Falls and had a wheelchair waiting for me because I am deaf. [also]...over and over I am asked, "oh you are deaf, so do you know Braille?" Actually I do so I just say "yes indeed I know Braille"...but don't you wonder? Grin! I do think it is important to keep laughing...whew!! (Mentor who is deaf)
Well, in my case, I usually ask some rather extreme question. I might say something like, "do you think I am braindead?" Most people say that this is too demanding and not a very good response. However, I think it is the way to go. (Ambassador who is blind)
People definitely have odd reactions to people with disabilities. I use a wheelchair some of the time (like amusement parks and airports where there are long walks), and if there is ever anyone walking with me or pushing my wheelchair, others will always speak to the person that's with me, even if I'm who they're asking about. I feel like I must have a sign on that says "please ignore me, I'm temporarily unable to communicate." Oh well. (Scholar)
As a hearing-impaired person, I am always running into people who see my hearing aids and assume they must shout at me (very uncomfortable if the aids are set at normal levels!). (Mentor)
I think that as with any minority group, there is an unfortunate tendency to assume that all disabled people are like the one or a few that an outsider knows. Examples I have faced include assumptions that I must be: cold, tired, incapable of dealing with my needs when I'm cold or tired, asexual, uninvolved in my daughter's parenting, hard of hearing, incapable of comprehending what I hear, starved for touching (usually a pat on the head or shoulders), uninterested in athletic events in which I cannot compete myself, destined for an early grave, financially needy, desirous of being approached by strangers, one with a faulty memory, without appreciation of humor...I could go on ad nauseam. (Mentor with mobility impairment)
Recently, as I was entering a restaurant, a mature lady said, "What's wrong with your legs?" (I have a spina bifida) I explained it was a birth defect in the lower spine. She replied, "I worked in a medical clinic for years and I have always felt so sorry for cripples." I hate the word "cripple." I worked 40 years in education and found it much easier to relate to the questions of young people as opposed to adults. During heated exchange of views with adults quite often the response is "but they are normal." Does this mean "abnormal" is the opposite of "normal"? I never thought of myself as "abnormal"-disabled, malfunctioning or handicapped perhaps, but never "abnormal." (Mentor)
I choose what people I want to take the time to explain my disability to. I communicate with an electronic device, so it would take all of my energy to explain to everyone who looks cross-eyed at me. (Mentor with a mobility and speech impairment)
Having CP, almost everyone assumes that I am mentally disabled, too. I get annoyed with this. Education is the key. For a long time, I yearned to "fit in." Young people today are wanting to stand out by coloring their hair (yellow, bright orange, etc.) and by wearing the "in" thing. I realized that I'm already there, and to accept my uniqueness. (Mentor)
That reminds me of the professor who told me that I probably couldn't see the board very well from where I had sat down. Frankly, I can't see the board from wherever I sit down... This also makes me think of my friend who invited me to come to a silent movie with him. (Mentor who is blind)
Human nature is to fear what society does not understand, so anything different is looked down upon, and this fear carries over into the way we are treated. My personal disability is Tourette's syndrome, as well as some symptoms of various other disorders, including coordination problems. People assume that since I obsess, and make facial movements and sounds that they consider to be strange, that I am some sort of a freak of nature that must be avoided. Luckily, I go to a relatively small school, so once people truly get to know me they overcome these hangups. (Scholar)
One of my favorite stories was told to me by a DVR counselor who is deaf. He's driving through a drive-through window. He gets to the speaker and says, "hello, I'm deaf and won't be able to hear you. My order is... I can read lips so we can communicate when I get to the window..." All of a sudden this woman in the booth gets this "oh good, I'm trained for this, I know what to do" look on her face and runs out and gives the guy a Braille menu...in his car...he's driving. (Mentor with a mobility impairment)
I am still laughing about that one...the thing is many of these people really have had training in how to "deal with us" different people, but we so rarely come along that when we do they are very eager to practice. (Mentor who is deaf)
I have a visual impairment. Some people assume that I am also stupid. Not just blind. I will be at a friend of my brother's or somewhere, and someone will ask my brother what my name is. (Scholar)
My personal opinion about disabilities is that everyone is disabled. It just so happens that there is a certain group whose disabilities are more obvious than others. I think that if people realized that in a sense we are all disabled, there would be no problem at all. (Scholar with mobility and visual impairments)
I just wanted to tell you that these assumptions are very well put. However, I'd like to put another spin on the discussion by asking, "what can we do to change the negative assumptions that people make about people with disabilities?" We know they make the assumptions, so isn't the next step working to change some of the negative assumptions around? (Mentor with a mobility impairment)
As people with disabilities I think we need to be assertive about what we need and don't need. If you're assertive you're making your needs politely, clearly known. Being demanding starts to cross over into being rude. (Mentor)
Last year, I went on a cruise with my family. One night, after dinner, I went up on deck to write in my journal. After 10 minutes passed, a couple walked by and sat right by me. The husband asked, "is this English?" pointing to my chicken scratches. I automatically said "yes!" without thinking. The husband looked at his wife and said "mentally retarded." He assumed that I did not know the meaning of the phrase. Instead of walking away and getting mad, even though I wanted to throw him off the boat, I decided to use a different approach. I started to talk to him and his wife about where are you from and blah, blah... He and his wife were special education teachers from the Bay Area. I told him I was from the Bay Area and working for Intel. We talked for five minutes...I think they got the message that the label they put on me wasn't true. (Mentor with cerebral palsy)
[some] people feel that because you have a visual impairment or other disability, you can't do normal tasks by yourself. I've even had people ask me if I wanted them to open my soda can for me. I think the best thing to do is to be assertive when people do something, or want to do something for you that you feel you can do for yourself. I think people are just trying to be helpful, and that they don't know for sure how much help, if any, they should give. (Scholar who is blind)
...and they will never know unless we tell them...Yes! The more often I do this the easier it becomes and the easier it becomes the more comfortable I am and that communicates it to the general population and makes them feel more comfortable and on and on and on...and somewhere in the midst of this is also the need to be both polite but also clear. It is up to us...and sometimes I feel 'YES!' And sometimes I feel 'Whew!' Because it does go on and on, day after day...strength to us all with a continued chuckle! (Mentor who is deaf)
People are stupid. That's why we need to educate them. Speak up. That's the only way to change society's views and...never give up.
The way to preempt or erase assumptions is to tell people what you need rather than letting them "act out" what they think you need. It is ok to say what you need help with. I think that is part of being independent. And just by being out and about and going after your normal business you also show people what you don't need help with. Actually, I think that we can never get rid of assumptions. After all, we all make assumptions based on our prior experience or inexperience. And even if a person has met someone with your disability, that other person may have had different abilities and needs than you do. For instance, people always assume that I access a computer using speech output, but I use a Braille display. The point is that communicating your needs is the best way to make everybody comfortable. (Mentor who is blind)
[tell] people what you can do, too. Until a while ago, people including my patrons, doubted my wanting to work with games and graphics. I have a vision problem but so what. I'll give it a try and if I can't then I can't. I do want to give it the most effort I can, and it's worked quite well so far. People just say, "ok, let's let you try it" and I usually end up doing fine. Like this semester I wanted to take an art class. My instructor was new to teaching a lower level class, and she had no past experience with someone visually impaired. I guess you don't see low vision students enrolling in a drawing class too often, but I love the class and am doing fine. And if you have to walk slow, or take a closer look at something, go for it. Yeah, it feels weird sometimes, and I try to avoid it, but it helps a lot, because then if people do see you they know you are more capable than they might think. (Ambassador)
That is a really good point. I can remember when I was working for Oregon Public Broadcasting in 1997. I wanted to set up a live show, which involved strong background knowledge of the control board. The station manager didn't think I could do this...[but he] gave me the opportunity to try it out and I was able to set up the show. The station manager was somewhat surprised...I guess that goes to show that it does not pay off to be a victim of other people's assumptions. (Ambassador who is blind)
We don't have to be "victims" of other people's assumptions. We are only victims if we choose not to take charge of a situation. If you are blind and someone grabs your arm and pushes you across the street and you don't say anything, but would like to, then you are letting the other person force the result of his assumptions on you. If you, on the other hand, either say, "thank you, but I'll be fine" or "let me take your arm," depending on what you would like to do, then you are taking charge and aren't a victim. (Mentor who is blind)
I think what people are trying to say here is that there is a difference between being the recipient of an act ("victimized") and allowing yourself to become overly affected by that act - i.e., to become a victim. (Mentor with mobility impairment)
I agree with others about taking charge so that we are not "victimized" by other people's assumptions. When [a blind person] tells a bystander "thanks, but I don't need your help," the bystander learns (we hope!) that people with visual impairments don't always need help. And when I ask the airline staff at the gate to tell me what someone had just announced over the public address system (which I can't lipread, unfortunately), the airline staff person learns (again we hope!) that deaf people are capable of asking for help when they need it. So, by being assertive, we lead people to look at their perceptions of us and even change them from inaccurate ones to more accurate ones. (Mentor who is deaf)
Along those same lines, when asking for help, you should be specific as to what you actually need so that the helper doesn't have to make assumptions. (Scholar who is blind)
The more the general public sees us out and about, the more they will understand that we can, and want to, be independent. (Pal with mobility impairment)
As a deaf person, I can relate to what others have said. I read lips and wear hearing aids. Sometimes people will speak much louder or exaggerate their lip movements to the point where I can't understand them at all. Or sometimes they speak so slowly, I fall asleep! Also, sometimes when I go tell a clerk or salesperson that I'm deaf, they start signing to me. And I'm sign-language illiterate! So that doesn't do me much good. But people are proud of their sign language skills, so I'm mostly amused and gently tell them that thanks, but they just need to talk in their accustomed way, and I'll understand them just fine- at least most of the time. If a man has a droopy moustache, heaven help me! (Mentor)
Hi. I loved the droopy moustache note and agree completely! I will sometimes try to duck my head to look under to find the moving lips that I know are there somewhere! Grin! (Mentor who is deaf)
I must say, this has been a fascinating discussion over the past few days. I have discovered lots about experiences of persons with disabilities...can I suggest that someone who writes well document the many points made in this discussion and write an article for a wide circulation publication such as Reader's Digest or one of the national Sunday newspaper supplement magazines?! I think the education of the non-disabled public that could result would be beneficial to everyone! (Mentor)

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