If we were real people.

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This post is for the disability blog carnival.

If I could eliminate any single disability stereotype, I would sit there and try to figure out which one underlies the most others, and pick that one. If you are going to be given a tool that selective and narrow, it’s good to choose carefully by picking the one whose destruction would destroy the most others. And after observing for a time, I have concluded that the stereotype that I would most want to eliminate is the one that says disabled people are not real or whole people.

If we were real people, killing us would be bad, and killing ourselves would be unfortunate rather than something people build special laws to enable.

If we were real people, the world would be designed in a way that allowed us to move through it without extra obstacles thrown in our way.

If we were real people, people would see us as individuals, rather than heroes, tragedies, inspirations, or representatives of our entire impairment group.

If we were real people, then giving us proper medical care would never be seen as pointless.

If we were real people, the whole myriad range of disability stereotypes would look flimsy and silly because people would see us as we are.

Of course we’re already real people. But the problem is that so few people have noticed.

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About Mel Baggs

I am a highly sensing person. I am a child of earth and water, I was born into a redwood forest and I left the forest but it never left me. I'm 34 as I wrote this. If I had an alignment like in role-playing games and MUDs, I'd be chaotic good all the way: I don't think it's possible to fill ethics into a moral code, the world is far too complex for that. I let the world be complex and chaotic and try to respond situation by situation from a small number of principles of right and wrong. My responses may seem to contradict each other, but that will be because either the situation has changed, or I have changed. I am a poet who is trying to practice more every day, hence the poetry blog. I am a cat lover and live with a wonderful elderly cat. I am a painter when I have the time, energy, and resources. I have multiple cognitive, physical, developmental, and psychiatric disabilities, and my health is not usually stable. Put all together, I'd be considered severely disabled. I get a lot of assistance throughout the day. I am a real living cyborg, part human part machine: I have a GJ feeding tube to feed me through one tube and drain my stomach through the other,, an InterStim implant for urinary retention, and a port (a permanent central IV line). I love life. I think Love (not the sentimental emotion, but the property of the world) is the most important thing that human beings can offer each other. Being near death enough times has taught me that, and has also taught me that I have no time for bullies or pettiness. I'm involved in disabilty rights and other causes that people these days would call 'social justice', but I don't consider myself part of the 'SJ community' or the 'anti-SJ community' because of that thing I said about pettiness -- they're more about one-upmanship than fixing the world. I wish they had not taken over the words 'social justice', which used to mean something else. I love talking to just ordinary people about fixing the world, they have far more realistic ideas and more likelihood of putting them into practice. I'm a Hufflepuff to the core, with some Gryffindor tendencies and even a little bit of Ravenclaw. I admire some Slytherins but I don't have much ambition or cunning at all. I still think the Slytherin common room is second best, with Hufflepuff coming first. My favorite color is brown, especially when combined with a bit of yellow or blue. My favorite music is country, and my favorite country artists are Kathy Mattea, Lacy J. Dalton, Kris Kristofferson and Rita Coolidge, Merle Haggard, and Loretta Lynn. I don't like most new country but i occasionally hear something on the radio I like. At an early age, my family listened to country almost exclusively to the point where I thought all the different types of country were all the different types of music! I couldn't put Lacy J. Dalton, Buffy Sainte-Marie, Dolly Parton, Merle Haggard, and Kris Kristofferson in the same category. Although now that I've grown up I can hear that they are all country, but as a kid my ear was trained more for minute differences in country styles, than for recognizing country from other types of music. Country isn't all I like. Some other bands and artists I like: The Cocteau Twins, Dead Can Dance, Rasputina, Jefferson Airplane, The Beatles, Rich Mullins (I'm not Christian but some Christian music is amazing), ), The Raventones/T.R. Kelley, Planet P Project/Tony Carey, Sinead Lohan, Donna Williams, Suzanne Vega, Phideaux, and Jethro Tull, to name a few. I love the Cocteau Twins in particular because they are everything being sensing is about: Words are chosen for their sound, not their meaning, the voice becomes yet another instrument rather than a conveyor of words, raw emotion pours out of them, there are layers upon layers, and they were around for long enough there's lots of their music in a variety of different styles -- including their later stuff where the words have more meaning than just sounds. Each period in their music has its benefits and drawbacks but I love them all, or nearly so. Their music comes as close as any music can come to conveying how I experience the world, as what Donna Williams calls 'pattern, form, and feel'. And Elizabeth Fraser has a beautiful voice, I once had a teenage crush on her. As I type this, I have a cat sitting on my shoulder, cheek to cheek with me, peering around and occasionally rubbing me. My relationship to her goes back 15 years to when she was six months old, and we've rarely been parted since. It's been an honor to watch her grow into a wise but crotchety old lady cat. She knows she's technically older than me and tells me so sometimes, especially during arguments. She has trouble with the fact that there are parts of the human world I know better than she does. She sees me as her big, dumb kitten who needs protecting, and is beside herself with worry if I end up in the hospital (which seems to happen frequently these days). I don't experience myself as having a gender identity, I call it being genderless. You'll sometimes see the pronouns sie and hir in my work, they are gender-neutral pronouns pronounced 'see' and 'hear'. I was raised female, which gives me both disadvantages (outside the trans community) and advantages (inside the trans community). You don't have to remember my pronouns, lots of people have trouble with gender-neutral pronouns. I won't be upset with you. People make mistakes, and some people just can't get the hang of new words, and that's okay. I have vocabulary problems myself (mostly comprehension), I'm not going to penalize other people for having vocabulary problems of their own. Right now my father is dying of cancer that's metastatized so many places they can't figure out where it started, my mother has severe myasthenia gravis that can land her in the ICU (and she's my father's primary caretaker), my "second mother" (who took over when I grew up and my family didn't know how to prepare me for the world) has endometrial cancer, and my cat is getting old. All of this is bringing death to the forefront of my mind and my poetry. In fact I think I've been able to write more poetry because of all the feelings about so many people dying or with precarious health. It was easier to handle when it was me that was going to die (averted by diagnosis and treatment of severe adrenal insufficiency that'd been going on for years). It's harder when it's someone else, someone you love. My other hobby is crocheting, and a lot of the time if I'm not writing, it'll be hard to find me without a crochet hook or occasional knitting needles in my hands. I love to be able to make things. I have been making hats and scarves with spare yarn (which I have a lot of), and putting them in City Hall Park wrapped in plastic, with notes saying "If you're cold, take this." I know what it's like to be cold in the winter, and if anyone takes them and stays warm I'd be overjoyed. You may have noticed I'm long-winded. This is actually the result of a language disability that makes it difficult for me to leave out details, to see two almost-identical things as perhaps something that doesn't need repeating, and to summarize or condense down my writing. I know this is a flaw in my writing, and it even prevents me from reading it sometimes, but I've found no solutions. Sometimes on my longer posts I'll put a "TL;DR" ("too long; didn''t read") summary at the end in bold letters for people to skip down to.. But even those don't feel adequate, even when I can do theme, which is not always. I think I'm getting better though. Learning haiku and other short poetry forms helps me condense my words better. Anyway, I hope that gives you enough idea of who I am. At my most basic, I care about Love more than anything (whenever I come near enough to death, I feel like I get asked the question "Did you Love, and did you express that Love properly?"), but like everyone I get sidetracked into things that are much less important. I try to make my writing an expression of Love. Sometimes I succeed.

3 responses »

  1. Also, if we were real people, other people wouldn’t see us as easy targets for bullying (either direct or subtle). This poem struck a thousand chords with me, and I am grateful beyond words that you wrote it, Amanda. I’m trying to work to change the culture of schools in my state so that more students would view us AS real people and classmates instead of just the “R-word” or “handicapped/disabled”. Here’s an overview of what my team and I are attempting:

    WANT TO HELP STUDENTS WITH DISABILITIES
    BE TREATED WITH MORE RESPECT?

    NOW is the time to act!!!

    Students with disabilities get teased and bullied more often than other people in school. Sometimes they drop out because they aren’t being treated fairly. That’s not refreshing news! If we, along with students, “Refresh Our Outlook”, schools all over the U.S. will change!

    Please join us in our plans via a grant from Pepsi Refresh® to engage Illinois students with disabilities in anti-bullying programs. Once we receive an official link to our “Refresh our Outlook” project on the Pepsi Refresh® website, we will ask you to VOTE and VOTE OFTEN!

    What you can do NOW:

    1. Go to http://www.refresheverything.com.
    2. Click on the “Join Refresh Everything”
    link in the bottom left-hand corner.
    3. Complete the “Sign Up” form.

    What to do on April 1st and every day in April:

    1. Go to http://www.refresheverything.com
    and sign in.
    2. Insert this link for the URL: http://www.RefreshEverything.com/refreshouroutlook
    3. VOTE for this project, and let your voice
    be heard!

    For more information, please contact Amy Walker or Shirley Paceley at (217) 875-1910 or awalker@maconresources.org or spaceley@maconresources.org.

    Again, thank you for the poem x 1,000,000,000. Sometimes I feel like you’re the only person in the world that really understands what I’m going through, especially with the “weird issues”, sensory and otherwise, I have from time to time.

  2. Pingback: If we were real people « Our life with MPD/DID

  3. Pingback: Happiness, Part 2: In which reality is twisted « Urocyon's Meanderings

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