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This Is Not About Knitting

Dear Ann,
Thanks to our excellent pal, Emma, I know that today is Blogging Against Disabilism Day. I’m not sure I have anything useful to say on this topic, but it’s one that’s near to my heart, so here goes.
Although I do not have personal experience of a physical disability, I have a nugget of special, certain knowledge about people who do. It is this: they are dealing with their physical problems pretty well. They are so knowledgeable about and accustomed to the work-arounds and strategies that get them over obstacles, that they do not think about it that much. What they have no control over is the attitudes of other people. There are the people who infantilize and patronize, the people who think they are ignoring the disability when in fact they are ignoring the person, the people who can’t control their facial expressions, and the people who ask intrusive questions, to name a few. The ignorance or disregard of other people can make life hard, harder than it already is or needs to be.
I know this because two people with severe physical difficulties were among the most influential companions of my childhood and youth. Both were athletic and intense young men. One, my mother’s younger brother John, only 16 years older than me, was in a car accident at age 20 that paralyzed him below the waist. He was in the Marines at the time. The other was my teacher Mr. Sanderhoff, who had had polio as a child. He, too, had no use of his legs, but like Uncle John, was physically strong enough to do almost anything.
Apart from their similar-in-effect physical problems and the fact that I was crazy about them, there could not be two more different men. Uncle John was an accident-prone hellcat. More fun than anything. He spent most of his waking hours smoking Kools and driving around in the souped-up, hand-controlled UncleJohnmobile du jour, which was always the then-state of the art, be it the V8s of the 60s or the custom Chevy vans of the 70s and beyond. He was strong enough to throw himself out of his wheelchair into the driver’s seat of his Thunderbird, reach out and grab his chair, fold it up and sling it in the back seat, and wrest it out again when he reached his destination. He hated being helped, so he structured his life so that he never went anywhere with stairs (this was the days before Universal Access was even a goal) or travelled by air, he hosted all large family gatherings at his own decidedly bacheloresque abode, and he dropped by to chat by pulling into the driveway and blasting his horn so that Mom could run down with 2 Pepsis and gossip through the window. He did everything, including getting in trouble, accidents, and fights, being Den Dad to my brother’s Cub Scout troop, and hauling me and my girlfriends to North High football games every Friday night (the last endeavor requiring a stoicism that has not been seen since ancient times).
I wish my pictures of him were not packed up right now (siblings: feel free to email me a picture from your own Uncle John shrines). When he knew you were taking his picture, he made a face or did something stupid. When he didn’t know, as when holding a baby or dog, he looked like Saint John of East Omaha, in a white t-shirt and straw cowboy hat. He disdained electric wheelchairs, which were not then what they are today. Wheeling under his own power (and being an ex-Marine) gave him arms like saplings. He was a great dancer when drunk, although on occasion he misjudged a wheelie and fell over backwards; this taught him to tuck in his head. He’s been gone for more than 10 years now. (An accident. Of course an accident.)
Mr. Sanderhoff, roughly the same age, was a very different man. A dreamy school teacher. (Swoonworthy, if you like the bookish type with floppy blond bangs, and I know you do.) His student-teaching stint was the second half of my fourth grade year. Before he started, Mrs. Tyler solemnly told us that this man (eek! man teacher!) had been told that he probably could or should not be a classroom teacher because of his handicap. She asked whether we thought we could be understanding of a teacher who used crutches, whether we could be considerate and kind and not ask embarrassing questions. We nodded, in awe of our brave selves. (I’m sure that being me, I piped up with something braggy about Uncle John.) Oh yes, we could. We would pay it no mind whatsoever. Not. A. Problem.
As great as Mrs. Tyler was, it must be said that she was an aged lady (in her 40s I’m sure–as old as THAT). Mr Sanderhoff was much livelier. He travelled faster over the gravel of the playground, with crutches, than a pack of 4th graders. He flung his legs, heavy with clicking braces, around like so much luggage. When he was in charge, our treat was not extra reading out loud, but extra baseball. He seemed to think that if he kept me slouching out in right field for long enough, I would catch something. (He was wrong.) He was interested in poetry, the New Math, the Civil Rights movement, the antiwar movement, and the Cold War (he told us that if the Soviets attacked, we needn’t worry about it, because Omaha would disappear in the first moments of a nuclear confrontation).
Mr. Sanderhoff spoke of these things less when we were 4th graders than when he returned to our school 2 years later as a full-fledged 6th grade teacher (yes, I got him). He seemed to want to shock us a little, or get us used to his disability. To lecture, he’d crutch over to his desk, prop his arms and hitch himself up onto the desk, and throw his crutches aside with a clatter. If they fell over, he didn’t stop talking or even look at them; he just picked them up, any way he could and not seeming to care if it was clumsy. We did get used to it, almost immediately, in fact. A child’s curiosity, once satisfied, moves on to the next mystery. Children have a lot to contend with, so why shouldn’t adults? Mr. Sanderhoff’s message seemed to be that the enterprise of life is full of difficulties, which should not deter one from important things like scaring children half to death about nuclear war and getting them to question their parents’ views of Richard Nixon.
At the time I made no connection between these two daily presences in my life, and certainly did not consider them heroic. They were who they were. What they had in common, I think, was anger and disgust with others’ pity or low expectations. A distinct chip on the shoulder, which was often overcome by joie de vivre.
Today I sometimes find myself in the position of wishing I could ‘present my credentials’ to the people with disabilities that I encounter in my life. To say, hey, I’m one of the people who sort of gets it– we can have a normal conversation. I won’t annoy you by being weird, because I’ve had these experiences, at an early enough age to form my thinking.
I am trying to give my own kids these kinds of experiences. The opportunities for learning and understanding are plentiful. But it would be easier if Uncle John and Mr. Sanderhoff were around, flinging equipment.
Go read some of the stuff here.
Tomorrow I have a backlog of repetitive stress-related knitting to clear out.
Love, Kay

40 Comments

40 Comments

  1. Kay,
    you are a great writer. Please never stop writing.
    xoxo Aara

  2. So beautifully put Kay.

  3. You write so beautifully that I can imagine these two men! The story made me think about the young fellow across the street who uses a wheelchair. I hang out with him and his sister after school a few days a week, and usually take my knitting along. I don’t often actually knit while I’m there, because he generally wants to beat me at rummy. But whenever he nearly runs over my toes, I remind him that I have pointy sticks and he’d best not do that! :O) samm who has learned a great deal from this boy and his family.

  4. Magnificent essay, Kay. Thank you for giving us these vivid portraits of two excellent men and one fine woman who loved them.

  5. Dude. I think I have a crush on Uncle John AND Mr. Sanderhoff and you know blonde bangs are so not my type. Thank you.

  6. (first time commenter…)
    thank you for this great piece. i can’t wait to share it with my mother. she was a teacher of disabled kids when i was in elementary school. on my school breaks, which were different from hers, i would go participate in her classroom for the week for fun. (yes, i am a geek. i went to school on my breaks.) i “got it” at an early age, too.
    not long ago, as an adult, a young woman who is a paraplegic entered my circles. i, too, wanted to ‘present my credentials’. i did, in a manner of speaking, and we are better friends for it.
    thanks again. well said.

  7. At the spa I used to work at, we had a member named Mort. He was over 60, sparse, wiry and completely bent over so that he looks at the ground. He’d had polio as a child. He kicked ass. Whenever a guest at the hotel was looking for someone to play tennis with, we’d call Mort. He’d show up and the guest would look at us like we were joking. We’d just smile and say, “Have fun!” Mort never lost.

  8. I really enjoyed reading this-I used to work with special needs kids and way preferred them over “regular” kids b/c you got the same fun, innocent kiddness without (for the most part) the bad attitude and sass! They were just themselves and they were wonderful!! But I still struggle with the balance of helping when it’s needed and still treating the person like any other person-a parent at my daughter’s school is married to a blind man and last nite at the school play, he was dropped off and waiting for her but had no idea where she was and there was little kid chaos everywhere around him and I wrestled with asking him if he needed guidance to somewhere to wait or would that seem patronizing to him? I asked him anyway b/c I decided I would have asked ANYONE who looked lost and confused if they needed help. Why is it that we think that they are somehow different on the inside just b/c they are different on the outside? After all, lots of people who look “normal” on the outside have major difficulties going on inside-as we’ve seen in the past weeks with our tragedy here in Virginia-and yet we wouldn’t think of talking exceptionally loud and slowly to, infantizing, or otherwise patronizing them. Thanks again for your lovely post!

  9. Beautiful.

  10. My dear husband of 36-plus years had polio when he was nine and had been in a wheelchair since. He went to an inaccessible high school and a more inaccessible university with help from his friends and a lot of determination. He’s been all over the world, to all seven continents, and he was an internationally-renowned researcher at NASA before he retired.
    Physical disabilities do limit people, of course, but frequently can be dealt with. Mental disabilities are much harder to overcome.

  11. You MOST certainly had something VERY useful to say as always. Thank you for the peek into the lives of 2 extraordinary men

  12. Great post. My husband uses a wheelchair and usually I don’t bring it up unless it’s relevant to the conversation, just as I don’t bring up the fact that we’re in an interracial relationship, or I’m a knitter, or whatever, unless it’s relevant to the conversation.
    We do need to recognize that there are all these -isms that do impact us all. We also need to look beyond them and not be one more person to inflict that -ism on the individual in front of us.

  13. Kay — Thanks for publicizing Blogging Against Disablism Day. As an out, loud and proud cripple, and a disability studies scholar, I just lurve today’s goings on. And as far as “presenting your credentials,” I wouldn’t worry — you’re totally among the “wise,” as Erving Goffman called allies of the stigmatized.

  14. kudos to you . . for 63 years I have watched my close first cousin battle the effects of polio contracted as a 2 year old. SHe has never let it stop her. in 1967 I came home from overseas with 2 young childen. SHe was at my mothers and offered to take the children for ice cream. AFter she left I suddenly realized SHE WAS DRIVING! She was the first person I ever knew who drove with hand controls. I was so used to her doing everything I never gave it a notice. SH is my hero.

  15. I applaud you for addressing an issue that many won’t admit to. Any disability is disheartening and each one requires an adjustment in how you face things and life. What amazes me is the fortitude and flexibility that humans have to survive and keep on living and communicating. Look at Stephen Hawking, he’s still hanging in there and going strong! I also find myself wishing I could present “credentials” as well. There are a few of us that “get it” and understand.

  16. Brava!!!!

  17. (Writing for AJ) You know, the great thing is, we can tell when people really get it. Your “credentials” shine through in how you talk to us, and how you talk about us.
    Thanks for being one of them.

  18. Oh dear Kay,
    Hug, kiss, sigh, sniff……

  19. Beautiful, nothing else to say. Thanks.

  20. Merci, madam. Fine recognition of a day. We knit, we wheel, we drool in our sleep – but don’t celebrate that day!

  21. Kay, what a great snap shot into the lives of these two men. Thank-you! As for presenting your credentials, no need. I can tell by your essay that you already see the individual as a person first and disability second. That’s going to come through loud and clear when you meet someone new. For over 20 years, I have been a social worker for people with developmental disabilities (right in your home town of Omaha) and I can tell you the most difficult part of a person’s disability is overcoming other people’s attitude about it. Thanks again for sharing your story.

  22. SO great–I feel like I know both of these guys now. Way to bring ‘em to life, Kay. So great.

  23. Truly Kay, a beautiful portrait. Thank you.

  24. Huzzah!…and thank you. I took a Sociology class and we had to write a report about Subjects of Prejudice; I wrote about Disabled Folk which astonished the teacher (believe me when I tell you this was no “professor”) “Never thought of that” said he. Pfhfhthtshtht. I needed a magnifier for my monitor at one point, temporary vision loss, and found a shop here which prepared or adapted electronics for the hearing- or visually-impaired. There was a man working there (WORKING, earning a decent wage) who was 100% blind, deaf and mute. He had a computer, a TDS machine that printed braille from the telephone and a keyboard. He could take phone calls and relay messages, and instead of speaking he would type his conversation, which appeared on his small monitor. You could type a response into his TDS. It was a slow conversation, but it was a conversation. No sound, no sight, no speech. Had a very droll sense of humor.

  25. well put!

  26. lovely stories. i came for the knitting & camaraderie, i leave knowing two more people than i could ever hope to encounter elsewhere.

  27. My husband was diagnosed with MS about three years ago. Although he does not seem to the casual observer to be disabled, he has had to make a few lifestyle changes. It’s just a matter of getting used to a different normal. As his MS progresses (he’s doing really well though because of amazing medical advances in the past ten years), we’ll just get used to new different normals.

  28. Wonderful!
    Thanks.

  29. Wonderful essay, but then you already knew that! I recently went to a showing of an independent documentary film called Blindsight, made by Lucy Walker, the daughter of a friend. It is the story of a blind woman from Germany who began a school for the blind in Tibet where there is great predjudice against any disabled due to cultural beliefs. She teamed with Eric Weihenmayer, the first blind person to summit Mt Everest who, along with 6 sighted climbers, took 6 blind kids mountain climbing to the peak closest to Everest. What an amazing film and what a group of kids. Their organization is called Braille Without Borders, meaning no limits to blind individuals…a good goal, I think. Thanks for the wonderful writing. I always enjoy your blog.

  30. Thanks so much – my work day is just so much easier to take when I bring you all along.

  31. Thank you!

  32. I had no idea that there was a day such as this. 3 years ago I feel at work, and I now have a 27% permanant disability rating, tho’ my doctor says it should be up to 45%. Welcome to the life of workman’s comp in California. I had to hire a lawyer to settle my case, that was won over a year ago. But I’m still waiting for the list of ‘approved’ doctors to start my medical treatment. It took them 17 months to give me pain pills, laid in bed for 2 1/2 years…so I guess they figure 3 years, 6 months to the day isn’t long to wait yet for medical treatment.
    I’m past being mad. They don’t care.
    Sitting in a wheel chair trying to get through security at LAX, is horribly demeaning. I hurt my foot, knee, hip, and shoulder, not my age or mental capacity to communicate. Yet, they think (the wheel chair pushers) that I can’t think, act, or speak on my own behalf. In reality, I just can’t stand in their security line for over an hour. However, after logging in well over 200,000 miles this past 1+, I can tell you I definatly know who is missing a few bricks from their load. It’s not me.
    Thanks for letting me know about this day. It’s the only place I saw any mention about it.

  33. Kay,
    Thank you, god, thank you. After reading this, I was filled with the urge to call and get in touch with my family, (not only my own mother’s-younger-brother, who was also in an accident when he was 20, also paralyzed, and is currently still in the midst of a long and normal life) just to reconnect with them. You struck a very deep chord in me, and I wanted to thank you for that.
    I wanted to ask you a question for a bit of advice; you mentioned a younger version of yourself piping up with “something braggy”. It makes me cringe to think of it, but I’m much much older than you were at that age, and I still find myself occasionally acting like that. I don’t really mean to, and I don’t really know whether or not I should. Whether I should offer up this bit of my family as some sort of legitimizing proof of my opinions (which sounds quite awful, actually, come to write it), or if it’s just as ignorant to assume that my experience with disability has anything to do with anyone else’s. Bah.
    This comment, I guess, illustrates what I’m trying to figure out-how to talk about it, when to talk about it.

  34. Thank you so much for this post.

  35. Kay,
    Thank you. I’ve been blessed with similar childhood experiences with mentally challenged people. It doesn’t matter what the disability is, we are all human and deserve to be treated with respect, understanding and care. I wish there were more people that would speak so eloquently about acceptance.

  36. Thanks so much, Kay, for this lovely and moving post. I work with persons who have disablities and feel really blessed to be able to see the day-to-day human stuff in their lives rather than just the disability. But it’s hard to write about and I don’t want to get all weird and sentimental. I just know these people as people, with all their faults and talents and foibles, and my life is richer as a result. It has also helped me so much with self-acceptance. Your post is a wonderful reminder of that.

  37. Thank you, Kay, for being so understanding and nice. I especially appreciate you spreading the tolerance.
    I was first disabled at the age of 13 (an accident) and I’ve had a lot of pain and difficulty walking since then. You wouldn’t believe the huge number of people that will stare at you, making you feel like a freak. They especially stare at me because I’m so young (21) and using canes and braces.
    Thanks again,
    Stacy

  38. Good post! Thanks so much, I’m glad to read it even though I got here late!

  39. i do understand. while my mother’s disability isn’t physical in the sense that your uncle john’s or your teacher’s, it is a disability. an “invisible” one. she’s deaf. you’d be amazed how many people raise their voice with the thought that if they talk loudly enough she’ll hear. even medical professionals! but she prevailed. she raised 3 kids (she had a “crying” light (she had a microphone attached to the crib, and it would activate a light when we cried)), helped my father with our farm (he was severely hard of hearing), learned to drive, and is still a productive part of society at 79. and everybody LOVES her (it doesn’t hurt that she’s tiny and cute (4’8″!)). go mom!

  40. What a wonderful story. Thank you for talking about this day I was not aware of Blogging Against Disablism Day 2007.
    Janice