Why the Word Disability Doesn’t Scare Me

Why the Word Disability Doesn’t Scare Me

Written by Kathleen Downes

The word disability doesn’t scare me. It does not mean that I am unable to do anything. It means that I am living another shade of the human experience. It means that my body is asymmetrical, discombobulated even, but certainly no less worthy. It has the peculiar, captivating essence of an abstract work of art. A disability means that society is not always sure how to accommodate me, how to make a place for me in time and space. A disability is the opportunity to talk about these things, to realize how much better the world would be if we expanded our ideas.

It does mean that I am unable to do some things, like walk by myself or climb a staircase, or tie my shoelaces. I can’t do these things, and that is a fact. It is okay to accept this truth, because every person has something that he or she cannot do. Acknowledging that I cannot do some things does not make me “less than” or “damaged” or “flawed”.

The big misconception is that that these words and “disability” are synonyms, when that simply is not the case. People reject the word “disability” and the word “disabled” because they have been trained to view them negatively. They have been trained to see these words as a statement of lesser value or lesser character. Words are what we allow them to become. In my world, the word disability means innovation, creativity, and acceptance. It means being all right with those who look or think or move differently. Words are what we allow them to become, and I have allowed this word to become a source of pride.

 It is a marker of identity, just like the words “black”, “female”, or “gay”. It is part of me, and I am part of it. Viewed in a loving light, it is just another adjective.

I dream of the day when it will be treated as such, when rather than reject a word, society will reject a connotation. The word disability belongs to me. It belongs to my culture, my history, my path of life, because I have reclaimed it.  It does not belong to fear, pity, and shame. No. It belongs to me. Positive connotation.

So, tell me I have a disability. Tell me I do. I dare you. When you say it, I will be proud. I hope that you will be too. And I hope that one day, not too long from now, people will wonder why they were so afraid of a word that can mean so many beautiful things.

Dear CP: Thoughts for World Cerebral Palsy Day

October 2 is World Cerebral Palsy Day, so I wrote a letter to my "life partner".

Dear CP,

Wow; we’ve been together a long time now. I guess you could say we’re pretty tight…in more ways than one. It is easy for people to think that you make my life more complicated. In some ways, they’re right. You’ve taught me all about fighting for things, even little ones, like getting into a building. You’ve taught me that people are not always kind to those who are different. The deep scar that runs down my back would not be there if not for you. I’m sure at some point when I was new to the world; my mother cried for all the “expected” things that you took away. But in so many ways they’re wrong, and I am grateful for the ways that you make my life simpler. You teach me everyday how to love all kinds of people. You crack me up all the time, and without you, where would my jokes come from? You’ve made me an advocate, and showed me that for every unkind person, there are two with enormous hearts. You remind me not to take life for granted, to celebrate whenever I can, and to appreciate little joys like Velcro and tilting powerchairs. You’ve given me beautiful friends who challenge me to open my heart a little wider.  The deep scar that runs down my back is part of our story… and I’m sure that at some point, my mother smiled for all the “unexpected” things that you brought with you. I know that I have. I more deeply understand what it means to accept and be accepted. I accept the universe as you gave it to me. What a gift.

Love,

Kathleen

An Open Letter to the Expectant Mother

Dear Expectant Mother,

I have a disability. I expect you’ve been told that I am the “news every mother to be dreads”. It’s not your fault you feel this way. The medical community has trained you to think that the worst has happened if your baby is born and found to be “like me”. Pregnancy message boards and magazines, instead of telling you that if your child does have a disability, he or she can still be happy, assuage this concern by telling you that “only one in thirty three babies is born with a birth defect”, according to the CDC. It’s not your fault that the doctors and nurses have presented the future as bleak by default should your baby be “like me”. They are merely repeating what our culture has told them for so many years. But before you lose sleep over the possibility of a life like mine, please listen to me, if you love your baby as deeply as you say you do. Do not be afraid. You have every right to be a little apprehensive should your child be disabled, because you will need to learn new things, and be prepared for the occasional unkind question. But please, do not be afraid. It pains me to know that my life, the life I love, is used as a scenario to scare you. I am good. I am happy. I am alive. And if any baby born to you has a disability, that baby can be the same. I dream of the day, when disability or not, the doctors will tell you, “Congratulations, you’re pregnant, and I know your baby will be beautiful”. I hope they will teach you to see someone like me as one of the trillions of enchanting human variations that may come to be as a result of you becoming a mom. I hope that they will acknowledge the extra wit, humor, and patience it requires to raise a disabled baby, but also acknowledge that if it happens, you will meet some amazing people. You will be exposed to a brilliant culture, and be able to know things so many of your “mommy friends” never will. I hope they will teach you to fear things like unkindness, selfishness, and lack of respect in your child, instead of disabilities. And if they don’t teach you, I hope you will teach them… because having a good heart is far more important than being able to walk.

If you have a baby that is so called “normal”, but knows nothing of treating others with love, you are in for a far more difficult life than another mother, whose baby will grow to be an exemplary being with a disability. Think hard about what you should truly be afraid of. Then, instead of wishing for a child who can walk, and talk, and see, and hear, and learn like all the others, wish for one who is kind, generous, compassionate, and alive… because any mother with a child like that is the luckiest mommy on earth. I wish you luck and thank you, because you have the most important job in the world. And I hope that if you see me pass by you on the street, you will notice my rattling, vibrantly decorated wheelchair, and then notice that I am a happy person.  I hope that you will close your eyes, and wish with every little piece of your heart, that the baby you’re expecting will be happy too. And then, you will realize that maybe; you want a child like me after all.

Love,

A “Grown-Up” with a Disability

If I'm Your Inspiration... Get a Hobby!

I do not look like a hero if you ask me. I don’t have any magical powers. A cape would get caught in my wheelchair. It takes me a half an hour to get the milk and pour it into a cup, and my attempts to get a comic book written about me have proven fruitless. However, in certain circles, it seems that people think me to be heroic. I was recently rolling on campus with some new friends who also use powerchairs when we were stopped by a nun who excitedly informed us that we were her heroes and it “was so cool to see us”. While I am glad to bring light to someone else’s day, I cannot understand what about a person in a wheelchair doing ordinary things is so inspiring. I was not out rescuing a cat from a tree, giving CPR to a dying person, or making an intellectual breakthrough. I was out getting ice cream… at 8:30. I can only imagine the legion of media coverage we would have attracted had we been getting ice cream in the dark.

I know that people mean well when they tell us we're inspiring. But intentions aside, putting people with disabilities on a pedestal for doing regular things indicates a serious problem of low expectations. Heroes are people who do something unexpected, extraordinary. I should not be considered a hero for doing ordinary things that everyone has the right to do. If society does not expect me to leave my house to get ice cream, then therein lies the problem. Just like those without disabilities, a girl going to the grocery store in a wheelchair should be just as unexciting as a girl going to the grocery store on her own two feet. Calling a person in a wheelchair a hero for getting up in the morning reinforces the stereotype that we as people with disabilities should be bitter, angry, couch-dwelling hermits. I have been known to sit on the couch and kill a bag of chips every now and again, but just like able-bodied people, my expectation is that yes, I will leave the house, go to school, hang out with my friends, or go shopping in a thoroughly uninteresting way. And I hope that one day the notion of any of this being inspiring will be laughable.

 I can't wait to have a deathday party for the piles of memes that applaud disabled people for existing. If we are given prizes for existing, the world is allowed to assume yet again that our quality of life must be terrible, when in reality I am very satisfied with things as they are. Furthermore, when society stops believing that disabled people doing things with their lives are the exception and not the rule, the proper supports will be there because we expect them to be and not be there as a special project for “special” people. Real, meaningful inclusion can exist only when society stops treating the success of a disabled person as though it happened by chance or exceptional courage. Success happens when people are given support and included without fanfare, and given the opportunity to join the ranks of ordinary successful people who go forward with their lives.

If I am to be inspiring, I want to be inspiring because of my skills or talents, because of the unique mark I leave on this world. Measure me by the same standard as my walking counterparts. If I go to school and get a job, raise a family, and have my own place, allow me to be just a person engaged in everyday life, if I create a masterpiece someday that would be inspiring by any (wo)man’s standard, then we can talk. Until that day, when I wake up in the morning and roll off to class, think to yourself, “how unoriginal. It’s like she does it everyday or something.” And don't think for a minute that the life I live is something you couldn't handle. If one day you found yourself in my seat, you would be amazed at how natural the choice to go forward felt… because going forward is what living people do.

You've Got (Hate) Mail: Max Begley and the Tragedy of Hate Towards People with Disabilities

If we as a society are going to evolve to be more loving and less prejudiced, we need to realize that hate directed towards any one identity group does terrible damage to every identity group. I was deeply disturbed and saddened upon reading the hateful letter directed at an autistic boy and his family in Canada. A lot of media attention and awareness efforts are dedicated to the horrors of racial slurs… but ableist slurs should be treated with the same seriousness, because people with disabilities are also experiencing the struggle of confronting words and actions that degrade our community. Earlier this week, the grandmother of 13-year-old autistic boy Max Begley received the letter below: http://www.examiner.com/article/autistic-boy-hate-letter-move-or-euthanize-him-full-text. The anonymous letter has left Max’s family in shock and fear. The letter’s author even states to take “his non-retarded body parts and donate them to science” because he is a hindrance to everyone.” Attitudes like this are a threat to people with and without disabilities, because they contribute to a culture of deciding for others what constitutes a worthy life. The Begleys are hoping to identify the writer and charge “One Pissed Off Mother” for her actions. However, as of yesterday, Ontario police said the letter did not qualify as a hate crime, but stated that it is being taken very seriously nonetheless. Personally, I think the police have made a grave mistake in not classifying the letter as a hate crime. The definition of a hate crime is a crime “motivated by racial, sexual, or other prejudice, usually involving violence”. Yes, people with disabilities are part of that “other” and encouraging someone to move or “euthanize” their son is certainly violent rhetoric. If behavior like this is ever going to stop, people need to stop breezing through Huffington Post calling this incident “a shame” and call it out for what it is: a threat directed at another person just for being who he is, motivated by bias, hatred, and misguided fear. I feel sad that the writer was raised in such a narrow-minded environment, and has clearly paid the price by becoming ignorant. Ignorance is often the product of that which others teach us, and sometimes, we can’t blame people for being ignorant. However, there is a line. Some lessons should be understood by anyone with a beating heart, and basic human respect is one of them. A person doesn’t have to be highly educated to appreciate the value of another person. We cannot make excuses for this woman, or minimize her actions based on the notion that she was too ignorant to know better. Maybe she has never met a person with a disability. But people with disabilities are people, other human beings, and we surely have met, and loved another human being. Furthermore, the writer of this letter is a mother, and by virtue of loving a child, deeply and indescribably as parents do, she should know better than to degrade another mother’s son. The writer states that Max “scares the hell out of her ‘normal’ children.” That, ma’m is what happens when we teach our children fear. Perhaps your children would not be so scared if you taught them not to be afraid of people who are different than they are. Going through life afraid of what we don’t understand is no way to live. And if you ever read this, I want you to know that Max Begley’s mother once cradled her child as you did, and saw the world in his eyes. Words like yours I am sure put daggers through her heart, belittled the precious person in whom she has invested her life. How would you feel if someone did that to your kid? I am sure you would think of when you cradled your child and saw the world in his eyes. So, truly, you and your child, and Max and his mom are not so different after all. 

The article about the Toronto police response can be found here

Author's Note: Unfortunately, Jim Begley (Max's dad) is quoted as saying that "“A person that's that crazy or demented who would fabricate something like that ... it leads me to believe that they're very dangerous, and right now I'm scared for my son's safety.“
This quote suggests that people with mental illnesses are responsible for the incident, perpetuating the myth that people with mental illnesses are violent, dangerous, or scary. In reality, people with mental illnesses are much more likely to be victims than perpetrators of violence. Jim Begley's views do not represent my own. The Examiner article was posted only to give background on Max's story, and to provide the letter's full text. Readers of The Examiner article should be conscious that blaming people with mental illnesses for this horrible act is ableist. If we want to fight ableism, we must do it by offering people with all types of disabilities respect. The letter to Max's is not the work of someone with a mental illness. It is the work of a hateful, ignorant person.