You Count Too!: A Forum for Disability Advocacy
Editor: Shannon M. Smith
Issue 2: November/December 1999
For further information, or if you would like to contribute an Article or Personal Perspective, write to:
Shannon Smith
991 King Street West P.O. Box 89093 Hamilton, On L8S 4R5
Please Correspond Using Type, Braille, Cassette or IBM Disk with
Ascii (Dos Text) Files.
If You Have Any Concerns/Suggestions,
Please Call Me At (905) 525-9140 Ext. 51054.
Editor's Letter
CONTENTS
Editor's Letter.........................................................................2
From the Mailbag.....................................3
You Can Help!........................................4
The Great Debate: Disabilities At Queen's Park.......4
Let's Talk About Sex!: Society's Misconceptions......5
Information Swap Shop................................6
It's All About You!..................................7
Naidh the Navigator: An Epic Adventure...............7
Contacting Me........................................9
Editor's Letter
By Shannon Smith
Season's greetings! and welcome to this issue. I hope it will prove to be both enjoyable and informative. Inasmuch as the last and first issue was devoid of much information, I have tried to provide some thought-provoking articles on various subjects pertaining to disabilities.
I am aware that the readership of this newsletter is almost nonexistent because I am not able to distribute it in a manner which would facilitate a superlative number of readers. In other words: HELP! If you have any ideas on how this newsletter could be distributed--through E-Mail or the Internet, for example--please let me know about them! Although I will be receiving McMaster Student Union approval to distribute this at their office, and although I already have the go-ahead--I think--to distribute at the Centre For Student Development, this is not enough. If you are really interested in helping, please read further to discover all the wonderful things you--I'm pointing my index finger right at you from out of this page--could do for this newsletter.
Actually, there really is no pressure. Help if you can, and if you find that extenuating circumstances--exams, for instance--prevent you from so doing, I will understand completely. This doesn't mean that I won't need or want any help, or that you can take this project over with one fell swoop. I simply mean that this newsletter will not thrive without your contributions. If you can help, not only will you earn my respect and gratitude, but you will also be promoting a tool which will help to educate the public about disabilities and provide a forum for debate or discussion among disabled persons.
As you are now aware, this is only the second issue of You Count Too!. I am assuming that any new readers will know little or nothing about me or the objectives of this newsletter. Therefore, I thought I would provide a segment from the first editor's letter to explain the aforesaid background and objectives.
Remember that not only is this pamphlet here to serve the disabled public, but it is also a tool to educate those who are deemed "normal" by society. They however have just as much a disability as a visually impaired person or a wheel-chair user; they--or the majority thereof--know little or nothing of how we think, how we feel, and how we wish to be treated. The lack of knowledge on the part of the "normal" majority concerning our welfare is one of the most crippling disabilities: the aforesaid people lose the joy of interacting on the same level with their fellow men and women.
You have doubtless heard the adage: "Do unto others as you would have others do unto you.". This is one of the most profound truths that we all, in respect for those around us, should abide by. However, multitudinous disabled persons--including myself--have felt extremely frustrated many a time at being treated like lesser beings. Granted, many people feel they must treat us as children because they don't think we are capable of taking care of ourselves. There are those developmentally challenged people and those with severe physical handicaps who have difficulties in doing this, but the entirely superfluous behaviour on the part of the "normal" majority can be very frustrating for one--like myself--who is quite capable of doing anything one sets one's mind to. Therefore, the uppermost reason in my mind for establishing this pamphlet is to educate people that we, notwithstanding our few limitations, can do most anything we choose to do.
I have had many experiences where adults whom I thought to be quite level-headed and beyond issuing childish behaviour--University officials, for example--have treated me like a baby just out of the cradle. One person actually asked me: "Oh, did they just let you out of the institution?". I think I know why this question was asked; only a few decades ago as surprising as it seems, many disabled people their actual abilities notwithstanding were deemed as people not fit to lead productive lives in society. They were consequently put into various institutions. However, that was then and this is undeniably now! But this person's question not only angered me, it also planted the spark within me to begin writing the document you are now reading.
I mentioned University officials a few lines back, and I suppose before I go on that I ought to give you some background information about myself. I am a visually impaired student currently attending McMaster University as an English major. My medical condition--with which I have been afflicted--if you want to call it an affliction--since my birth--is known as Cepto Optic Dysplasia. In Layman's terms, that means that my optic nerve decayed from lack of oxygen before I was born. I am currently living independently--something I have done for almost three years now--and I am self-employed as a Braille transcriber. Many "normal" members of society are aghast that I could actually live on my own, but I am very independent and I wish to remain so. And yes, for any "normal" readers, I can cook and keep house with relative--if not extreme--ease. (I don't just make microwave TV dinners, either. Would you believe that one who is often deemed a "poor blind person" could actually make fettuccine alfredo with home-made alfredo sauce?)
I would like to hear about you now, whether you are disabled or whether you are someone who is interested in assisting disabled persons or in being educated about disabilities. Unfortunately, my perspective is a bit dim as I know little or nothing about hearing impairment and cognitive disabilities. I would greatly appreciate any articles on any and all types of disability, for I am hoping that this pamphlet will be a forum for all disability issues. Please remember, however, that I do not appreciate plagiarism. If you site any passages from journals or magazines, please attach a reference or footnote to your article. You may send any articles and/or personal perspectives on how disability affects or afflicts you to:
Shannon Smith
991 King Street West P.O. Box 89093
Hamilton, On L8S 4R5.
If you wish to correspond, you may do so in type, on cassette, in Grade II braille or on IBM diskette using Ascii (Dos Text) files. Thank you in advance.
From the Mailbag
Dear Shannon:
Hi. I'm Jen Crewell, and I just read your first issue of You Count Too. I liked it, but I was hoping you would provide more information on varying types of disability. I would like to become a rehab teacher, and I don't know all that much about some disabilities. You also don't mention if you're publishing your issues monthly, bimonthly or quarterly. (I'm expecting you're not publishing them annually). I'm also wondering if you can leave your telephone number for people to call you with their thoughts about disabilities. I know people don't like prank calls, but the address really isn't enough. You also really should have a web page for this, or at least send it via E-mail. Well, those are my ideas. I hope they help.
Thanks, Jen, for those ideas. I had been considering providing my phone number before you wrote and advised me to do so. You are right; I do somehow need to distribute the newsletter via E-Mail. If you can help in this manner, please let me know. As far as the varying disabilities are concerned, I am relying on my readers to help me acquire information on those. Also, I will try to distribute the newsletter monthly, though this issue spans two months because of time constraints and exams. Good luck with your rehab teaching. I look forward to any further information/ideas you may have.
--Shannon
You Can Help!
By Shannon Smith
At this time, my IBM 486 is devoid of both E-Mail and internet capabilities. If you know of a manner in which this newsletter could be distributed via E-Mail or the web, please let me know. I am interested in compiling a distribution list of people who would like to become involved in this forum. If you know of anyone who might be interested, please tell that person about this newsletter. Though E-Mail and the internet are important tools, one should not forget good old networking or word of mouth.
Listed here are the positions you as a helper could fill.
-- A regular reporter to write articles on issues which effect disabled persons
-- someone willing to distribute this newsletter to interested parties via E-mail/internet
-- someone with a publishing program who could spiff this newsletter up a bit
-- a writer who could discuss individual disabilities
-- a correspondent from MDAG, the McMaster Disability Advocacy Group to outline MDAG's projects to make the campus more accessible. If you would like to help, please call me at
(905) 525-9140 Ext. 51054. You may also write to:
Shannon Smith
991 King St. W. P.O. Box 89093
Hamilton, On
L8S 4R5
Please correspond using type, braille, cassette or IBM diskette with Ascii (Dos Text) files. If you can fill one of the positions listed above, you will be considered a full-time staff member. This has its perks: you'll see your name in print!
You can also help another way by contributing any articles/personal perspectives/ideas concerning disabilities. In so doing, you will help to create a bigger and better forum for the discussion of issues regarding disabled persons today. Please send any ideas you may have to the above address, or give me a call. You don't have to be a disabled person yourself. All you need do is contribute your articles and ideas as long as they pertain in some way to disability issues. Thank you.
The Great Debate: Disabilities At Queen's Park
By Shannon Smith
It's Friday night on a busy downtown Toronto street. The traffic, not to mention the swelling crowds of pedestrians swarming the pavement, is horrendous. Everyone seems to want to get somewhere in a terrible hurry. When a blind man using a white cane tries to circumvent the quickly growing throng, he is jostled and pushed in the wrong direction. When he tries to cross the street, the road is so wide and so full of potholes and other obstructions that he cannot cross safely. In the fray, the cane is knocked from the man's hand. Some people laugh openly at his predicament, some people snigger and jeer behind his back. A youth even throws a stone in his face. An elderly woman suddenly grabs his arm, pushing him in the path of a truck. Do you find this hard to believe? You shouldn't. It's perfectly normal.
I have encountered this type of treatment from people many a time, as has the aforesaid "blind man", who is a friend of mine. Situations like this vary in severity. Sometimes even worse situations can evolve. The long and short of it all is that, in many cases, disabled people are not treated as normal human beings. You may wonder what this has to do with Queen's Park. Well, according to my knowledge albeit rather limited, the Disabilities Act states that we and our non-disabled counterparts are equals and should be treated thus. In most cases, whether we are with colleagues, with friends, walking down the street alone, at a restaurant, etc., we are often treated as subhumans beneath the dignities of those around us. Most buildings are not wheel-chair accessible. Many TV programs are not close-captioned for the hearing impaired. My question to you, therefore, is: Should Mike Harris be doing anything about this? He can keep generating Disability Acts, but pieces of paper cannot change or even affect the way we are treated.
What are your views on the current Disabilities Act? Do you think anything should be changed/added? We all know that Mikey can't change the characters of individual people, but what about society in general? How can Mike Harris and those working with him be better educated about disability? Please call or write to the number or address above with your views on this subject. You can write a full article, or simply a brief response. If I receive enough responses, the next newsletter will contain a section devoted to this issue. If it is a feasible option, I may consider submitting--with your permission--a compilation of your responses to either the Canadian branch of the National Federation of the Blind, the Canadian Council of the Blind, any other disability forums which are brought to my attention, or the Member of Parliament for this riding.
I hope this encourages you to contribute your views on this subject. If you are not disabled, you can write from your own perspective about how you think disabled people should be treated. Is this an important issue for you? Could anything be changed in your area? Could it be more accessible to disabled persons? What could be changed, and why? This is a very broad topic. You can approach it from any angle. Your submission should be no more than 800 words. I look forward to reading what you have to say regarding this issue and sharing it with others.
Let's Talk About Sex!: Society's Misconceptions
By Shannon Smith
Tim sits at the kitchen table across from his mother, the light of the cafe lamp above their heads playing over her ashen features. She sits slumped over the table, and does not turn her face to look at her son.
"Mom, listen to me," Tim exclaims in agitation, grasping his mother's arm. A slight slur is evident in his speech, and his movements are a little slow. This is because he has Downe's Syndrome. "Listen, Mom," he continues, tugging at her sleeve. "I'm thirty-seven now. I should be able to live on my own and have a girl-friend like any normal person."
"But you're not a normal person, Tim," his mother mumbles. "You have to realize you have limitations. You have Downe's Syndrome, and you can't live like a normal human being."
"But Mom, I need a relationship. I want to have kids," and-- "Tim, you know you won't be able to have children. They'll be-- Well, lots of things will be wrong with them. Arms and legs might be missing... Anything could happen. What I'm trying to tell you is... I don't think you should have sex at all."
As far as I know from my mother, this was almost an exact replica of the discourse which occurred between my uncle--his real name will not be mentioned here--and my grandmother. My uncle has been affected by Downe's Syndrome all his life. He is now in his late forties, but he is still living with my grandmother. He wants to live independently and have a girl-friend as was mentioned, but she has too many misconceptions to let him move out on his own. Not only does she deem him unable to care for himself, she believes that the children he longs to have will be born with multiple disfigurements. So, he stays at home, while his chance to have children diminishes. Several people have asked me why he doesn't just decide to move out. He doesn't know he can.
Many "normal" people have misconceptions about disabled people and sex. I once read an essay about a blind woman whose friends decried outright the fact that she wanted to have children. They chided her for not realizing that she had "limitations", and proclaimed that she wouldn't be able to take care of her kids. My mother basically says the same thing to me now. One finds this misinformation very disheartening, but one still continues to listen and take it to heart. Why? One never knows. It's easy to think that one's children might have multiple birth defects. Some people even say that it is impossible for a disabled person--a wheel-chair user, for example--even to enjoy sex. But, as I mentioned, this is misinformation.
I know several disabled couples who are enjoying and exploring every capacity of their relationships. They are raising fully-sighted children, and they have managed very well to adapt. I also know a paraplegic who is presently living with his girl-friend. She, by the way, is expecting a baby.
As you can see, society is fraught with several misconceptions surrounding the issue of sexual intercourse and raising children. There are only a few rare cases where children are born with defects, and this is generally not due to the disability(s) of their parents. If a disability is hereditary, however, a doctor should be consulted on the issue of family planning. There are very few limitations to disabled people who are involved in relationships. In fact, these should not be dwelled on or worried over unless they pose a great problem. Instead, the relationship should be fully enjoyed.
Information Swap Shop
By Shannon Smith
I have some shareware programs which, if anyone is interested, I would like to share with computer users who are disabled. A shareware program is one which may be shared among friends, family, etc., and used for a limited amount of time to see is it is enjoyed by the user. The author usually requires a registration fee after this period. This is like being able to try before you buy.
The programs which I am offering include a wide array of text-based adventure games which the blind can play with sighted counterparts, a calendar which is speech-synthesizer friendly, and a program called Access Dos which allows people with multiple disabilities to readily use the computer. Access Dos is a remarkable program in that it allows for the user with difficulty using his/her hands to type with a stick or reaching aid. If a key is accidentally pressed, the program will not print it to the screen unless it is held down for more than a length of time which the user can specify. For people who are hearing-impaired, beeps and sounds made by the computer are replaced by flashing lights. These and a number of other features are discussed in full detail in the manual which comes on the disk with the program.
I have a multitude of other utilities--word processors, spreadsheets, calculators, etc. which are very speech-synthesizer friendly. If you are interested in any of these programs, please write to me at:
Shannon Smith
991 King St. W. P.O. Box 89093
Hamilton, On
L8S 4R5
I would be glad to mail you a virus-free disk containing these shareable programs.
It's All About You!
By Naidh Davoren
Hi! My name is Naidh--it's pronounced Neve--Davoren. I am a resident of Edinburgh, Scotland, though I just moved from County Limerick in Ireland. I am a Celtic archaeologist; I work with my boss Dr. Gordon Symonds at various sites throughout the British isles, digging up old artifacts left by the Celts as they emigrated from Eastern Europe to England, Ireland, Scotland, Wales and Gall. I also have retinitis pigmentosa.
You may be wondering how the heck some Irish lass could be writing in a Canadian newsletter. I'm a friend of Shannon Smith, your estimable editor, and when she asked me to write a piece for this issue I gladly obliged. I didn't quite know what I wanted to write at first, but when I read the first issue and noted the entire lack of response to it, I knew what I had to say. This may not be the greatest work ever assembled as technology to make it look all spiffy is rather limited. However, it is a very important operation Shannon has taken on. It's not about her receiving a multitude of fame and glory for such good work. It's all about you.
Your views and your ideas--and a few of my own, too *grin*--should be expressed herein. Why not start your journalism career off by writing your thoughts in this newsletter. Who knows: maybe a few years down the road I'll be able to say: "My first glimpse of a famous journalist's work was in this newsletter." Okay, okay, I know it may seem like Shannon and I are pressuring you a lot. But if issues surrounding disabled people are important to you, please, please express them here. That's what this newsletter is for.
Enough of my preaching! I believe you may be reading of me in the future issues. I'd like to begin a column on various disabled people and how they are changing or affecting the environment in which they live. If you know of anybody who is disabled and who has done/is doing great things in his/her community, send your thoughts Shannon's way and she'll pass them on to me. Thank you in advance. Good luck with your exams, and don't stress out too much. I'm just glad mine are all over and done with. *Chuckle.* Merry Christmas, happy Hanukkah or Kwanza or ramadan or whatever you celebrate. I hope Shannon will be able to include your comments in the first issue of the new year! Eren go bragh!
Naidh the Navigator: An Epic Adventure
Episode 1 By Shannon Smith
It's early on a bleak Tuesday morning. The office--a trailer parked on one of the sites in County Cork Ireland on which Naidh and the archaeological crew are working--is empty. A single ambiguous snaking line of mist slithers slowly through the open office window and hovers like a small, indiscriminate cloud of impending doom.
"It's too early!" Naidh bemoans groggily to herself as she extricates herself and her manual typewriter from the dilapidated black English car--a Metro--owned by her boss, Dr. Symonds. It's time to start writing reports on the photos Maria Lavagno took of yesterday's dig. Unfortunately, she feels like doing nothing of the kind. She remembers how Maria and Bill Basset, one of the diggers, jeered at her yesterday because of her "disease". Naidh is partially blind due to retinitis pigmentosa.
Disregarding the words of her boss to "hurry and get those reports done", Naidh rushes headlong up the steps of the trailer and into the office, slamming and locking the door behind her. She thunks her typewriter and briefcase down onto the make-shift desk and sits sobbing in a chair right under the misty window. She wonders why she can't work in peace, and why the members of the digging crew have to jeer and laugh at her all the time. After she finishes having her cry, she looks up at the window and notices the odd presence of the snake-like mist winding about the room. It seems so odd, and she moves closer to examine it more carefully. As she does, the world around her seems to disappear...
She is floating, falling fast through nothingness. The air around her is stale and unmoving. She falls head-first into empty space, into a blank void where nothing lives or breathes. Then, the air feels as if it is charged with energy, and she is spinning downwards in a blank, black vortex. She is pushed from one air-current to another and spun and thrown until her mind aches for freedom. And then...
"So, you're new here, eh? I don't know why O'Donal hired you, but here you are. You can write a report about the uprising that has just occurred on Sunday. Why are you looking at me all goggle-eyed like that?"
Naidh has no idea where she is. She simply knows she is in an office, facing a bespectacled, bristle-bearded gentleman across a large, bare desk.
"Ahem, excuse me--er--that is, what uprising--"
""What uprising," she asks? What uprising? Where have you been all your life. Don't you know that an uprising just took place last Sunday? Easter Sunday?"
"You mean the Irish uprising of Easter, 1916?" Naidh asks incredulously. Then she looks down at herself and notices that she is wearing a long, pleated blue skirt and white blouse. Where, she wonders, are her jeans and sneakers.
"O'Donal got a really bright one this time," the man mutters sarcastically. "Yes, I mean the Irish uprising of Easter, 1916," he adds. "So, write a report on that. I'll expect it in by Friday. This is a newspaper after all, not a monkey house." He bends closer across the desk to look directly into her face. His bristly beard almost touches her cheek. "Say, what's the matter with your eyes?" he asks.
"I have retinitis pigmentosa," Naidh rejoins sheepishly.
"Oh. You mean you're blind? Then you can't work for this paper. James will show you the door--"
"Look, Mr.--uh, whatever your name is--just because I have a condition which leaves me partially sighted, it doesn't mean I can't work at a bloody newspaper!" Naidh exclaims proudly, gaining some semblance of self-control. "I don't know what just happened to me, but wherever I am now I can still work at your newspaper! I am a human being, after all."
As she speaks these words, the air around her seems to condense into a snake-like mist. She is flung head-first through rushing, spinning air. Suddenly, just when she thinks she'll go mad, the spinning stops. As she floats in some sort of voidal stasis, she hears a pleasant male voice thick with an Irish accent. "You have done well, Naidh," the disembodied voice tells her. "You have not only shown the newspaper journalist that disabilities do not hinder a person from doing remarkable things, but you have also shown yourself. I, in case you're wondering, am Aengus Og, the Celtic god of love. I am here to teach you that you can do anything and go anywhere in spite of your disability. You must navigate many places and times, and you can only return to your own time when you have conquered your dislike of your disability."
Thus ends the first episode of Naidh the Navigator. If you have any ideas for future episodes, please write to me about them. You can even write your own episodes if you're feeling creative.
Contacting Me
If you have any thoughts/views/ideas for this newsletter, you may write to the following address:
Shannon Smith
991 King St. W. PO. Box 89093
Hamilton On
L8S 4R5
