Report from the Field: “Compassion in Po-Biz”

September 4, 2014 | by Jennifer Bartlett, OP-ED | 23

Everyone knows the stereotype about poets. Our vocation has one of the highest rates of suicide {only after playwrights}. We are depressives and alcoholics. Drug addicts. Thinkers. Feelers. Brooders. But, there is something else. We are vicious.

It’s time for poets to be more open about our suicide rates and tendency toward self-destruction and argument. If you use the classic archetype, the craft we have chosen is one in which we are sensitive to feeling and environment. I don’t know if it’s because I’m a poet or because I’m just Jennifer, but honestly, most days, I have to fight to stay emotionally stable. Not committing suicide for me is a conscious act; not something that comes naturally nor organically. Other poets have told me a similar secret.

So, given this, why are we so cruel to each other? Where is the compassion in the poetry world? Usually, it’s men putting down women. Usually, it’s the abled putting down the disabled. But that’s not exclusive. And I’m no better. I’ve made some important critical arguments for the sake of good. I’ve also been a real asshole. I’ve also come off as being an asshole out of misunderstanding. I’d like to take a moment to apologize for all of the above.

The Internet has created a situation in which people can sit in their houses and attack others with little or no recourse. And misunderstandings run rampant. It is really hard to get your message across and the more you try, the more you sound like a cad. I’ve also been unjustly attacked by both men and women, abled and disabled. I am far from the only one to attack or be attacked. Jeff Nagy based an entire magazine on it.

The only way to justify it is that poets think stakes are high and resources are scarce. This has been written before. There are very few jobs, very few readers, very few awards and publishers. Interestingly enough, the older poets: Michael Palmer, Fanny Howe, Mary Oliver, and so on, tend to hide. While they most likely gossip, it’s how gossip is supposed to occur, over tea in a yard in Northern Vermont.

When a poet kills herself, everyone laments and writes loving words about the great work. What if that poet just couldn’t take it anymore? What if she couldn’t sit through one more nasty department meeting or see a friend’s work ripped to shreds on the defunct Buffalo list (And why is that list gone? Why can’t people comment on Silliman’s blog anymore? Ask yourself, Sally!) What responsibility do we have toward each other? If we really care about each other – which frankly looks like my husband’s favorite episode of the Simpsons “One of us! One of us!” – why don’t we take it down a notch? And the problem is that there’s no litmus test to be a poet.  It’s, like alcoholism, a self-diagnosed disease.

I, personally, have had trouble whenever I speak up about ableism. Recently, I posted in the middle of a tumultuous conversation taking place in one thread about race in the Facebook group “Binders Full of Women Writers.” My point was that I, as a disability activist, had to form a thick skin and could not jump to quit or attack every ableist word/comment. My point, probably made at the wrong time in the wrong environment, was that sometimes people aren’t even aware that they are being prejudiced. I pointed out that the word “lame” was used in this group often and loosely. “Crazy” and “retarded” also continue to be continuously used in the overall culture.

In response, I was called ridiculous, a troll, a silencer, and one woman insisted on using the word “handicapped” and asked for an explanation when I asked her to stop. What she missed was the very crux of the thing I was trying to point out: that one would be in a vicious fight against racism, but use the word “handicapped.” When I explained why the word was in bad taste, she more or less said, why should I listen to you? Then, as often happens when I’m arguing this case, another writer with a disability sort of made a jest of my argument and noted that she would not mention ableism.

These women were probably right.  It was a little obnoxious to bring disability into a discussion regarding race. On the other hand, their comments reflected behaviors that I experience again and again when I speak out. A disabled person jumps in to say they don’t agree and side with the abled commenters. They always are quick to point out that they do not regard disability as an identity, but as a point of medical suffering. These commenters want abled commenters to be assured that I am way off the mark, and they do not agree that disability can even exist as other than a tragic state.

Aren’t racism, sexism, homophobia, and ableism duel partners? If you bring up another minority’s problems during a discussion of one minority are you really that out of line? One person suggested making my own thread about it. But, that’s just it. People will fight until the cows come home over race or gender. If the discussion is about disability, people turn away. I think this has to do with solid negative perceptions about the different body and people’s fear of saying the wrong thing.

Activists often fail to recognize the intersections of problems between minorities. Oppression manifests itself in the same ways for all minorities. The pain is real and valid. I do put the responsibility to some degree on people with disabilities themselves. Depending on the impairment, folks with disabilities can be hesitant to claim their disability as an identity, rather something to be cured or fixed. This is due to the real frustration and pain that disability causes. Although, I would make the point that inhabiting a body of any given minority can cause emotional, social, and even physical angst, yet these are also regarded as identities. Until we can find this balance in disability society will be allowed to be ableist.

Perhaps a meeting place could be the word poet. Recently, an older, smarter poet told me my “identity” was poet. My gender is poet. My race is poet. My ethnicity is poet. I would add, my disability, my movement, my body is poet. Since, most of the people this essay is addressed to are, in fact, poets perhaps this is the one form of marginalization that we can agree upon. As I told my kid, ‘Well, you don’t know who Galway Kinnell is!” To which he replied, “No one knows who that is!”

Since we are all marginalized (only in our own special way) maybe we could fight the power together, instead of fighting against each other for the power.

And maybe for just once, we could add disability to that.

 

Jen Bartlett Pug PicJennifer Bartlett was born in the San Francisco Bay Area and educated at the University of New Mexico, Vermont College, and Brooklyn College. She is the author of Derivative of the Moving Image (UNM Press 2007), (a) lullaby without any music (Chax 2012), and Autobiography/Anti-Autobiography (Theenk 2014). Bartlett also co-edited, with Sheila Black and Michael Northen, Beauty is a Verb: The New Poetry of Disability. Bartlett has received fellowships from the New York Foundation for the Arts, Fund for Poetry, and the Dodd Research Center at the University of Connecticut. She is currently writing a full-length biography of the poet Larry Eigner. Bartlett poetry and disability awareness at Willie Mae Rock Camp, United Cerebral Palsy, the MS Society, and New York Public Schools.

http://saintelizabethstreet.blogspot.com

23 Comments to 'Report from the Field: “Compassion in Po-Biz”'

  • Beth Joselow says:

    Thank you for this, Jennifer. In my counseling practice I work with many teens (girls, especially) who are in agony over whatever makes them “different” from the kids with big social lives and seeming comfort in the world. Over and over I hear stories of exclusion, sarcasm, being made fun of and overt nastiness. I think most of us have experienced that at one time or another, and for one reason or another. So I would enlarge your argument to say that oppression is really a lack of ability to recognize our essential relatedness as human beings, however we are made or come to make ourselves. When we are able to see sameness in place of difference, we can get to work to eliminate oppression, cruelty and callousness. Brava for putting it out there that even seemingly sensitive souls are not always gentle with each other.

  • You rock!!!!! Great article!!!! Gives me hope and many ideas!!!!!

  • Cynthia says:

    Thanks for writing this, Jennifer! I totally agree with you. I am also amazed that people who understand institutionalized racism and how it is harmful to certain minorities, people who support the right of LGBTQ to live an openly life with their loved one and the right to get married and other marginalized groups do not understand the parallel that can be drawn from their own struggles with the struggles and experiences faced by people with disabilities and therefore won’t support our fight for equal justice or believe that our feelings and experiences dealing with oppression are also valid. I hope that no matter what others think or try to silence you, that you would keep writing and make your voice heard about this issue.

  • Sophia says:

    I think the distinction is this — if we lived in a completely 100% accepting and open society, would the angst from being born in a certain form be fully eliminated, or merely reduced?

    In the case of race or gender or sexual orientation, I would say that an all-inclusive society would eliminate the angst altogether.

    On the other hand, where disability and discongruity between brain-sex and body-sex are concerned though — yes, a fully-inclusive society would *reduce* the angst, but I don’t think it would eliminate it entirely.

    As both a transsexual woman *and* a disabled person I can say this —- yes, my life would be much easier than it is if I lived in a fully inclusive society — but there would still be *some* angst from not being born in a body that aligns with what my brain expects no matter *how* compassionate society is about it.

    Granted – I agree that you are entitled to see disability in a very different light from me. I respect your view — but I also feel that those who feel as I do should feel free to be honest about how we feel, and I don’t feel we’re always given that right. Those who feel like you feel should not be told — and those who feel like I feel should not get criticized for a “negative attitude” just for voicing our feelings honestly.

  • Jennifer Bartlett says:

    Beth, Cynthia, Albino, and Sophie,

    Thank you for your generous replies. Sophia, thank you for your honesty. I know that everyone views and deals with their disability differently.

    My disability is cerebral palsy. I have “been this way” my entire life, so I cannot conceptualize my body working in a way other than it does. Certainly if I were to acquire a secondary disability, I would process that differently.

    I have heard your lament from many people who feel they are alienated from the disability community and activism. For this, I am sorry.

    My primary point in all my writing – and I think this is sometimes missed, is that hopefully you can agree that all people with disabilities deserve respect, jobs, physical access, and to be regarded as sexual beings. I am attempting to parse together how the movement can accomplish these things given our diverse thinking on the body. Any ideas?

  • MS says:

    This piece makes some good points but is overall in bad faith. I’m not sure why you would deliberately mention the name of a FB group whose terms of joining are that you don’t publicize the group, except as an attention-grabbing measure. I also don’t think what you’ve written has anything to do with poets. Lots of people are suicidal and depressed; writers just happen to be articulate about their feelings, thus the stereotype. Your piece is about social media and intersectionality, not poetry. If you raise the right topic at the wrong time in a group of people who are passionate and verbal and have a lot of free time to debate things, you can expect that not everyone will agree with you. The content of what you’re saying is right on, and if you’d started a new thread, you would have pulled in a lot of allies. Instead, you chose to be divisive by hitching your oppression to that of another group. What you don’t mention here (and perhaps don’t even realize) is that the women of color in that conversation experienced a white woman (yet again) derailing a conversation about race to say “me too me too what about MY oppression,” which is tedious, to say the least.

    • Nica says:

      I’d like to clarify a point you’ve made regarding starting a separate thread on disability instead of derailing the 300+ comment thread you mentioned. I was participating in that thread about white privilege, and I did start a new thread in response to the way I felt some people were needlessly dismissive on the intersection between white privilege and ableism. Incidentally, that topic was in no danger of falling silent or not righting itself back on track. As for my thread, I got one comment. 9 likes. Jennifer also started a thread about ableist language. Crickets were heard. Maybe both of our posts weren’t well written or compelling? Maybe Jennifer’s point on silence and invisibility have merit? Can you see why she might have to follow the crowd to bring up, and then have illustrated right there, her points on micro-aggression?

  • Jennifer Bartlett says:

    MS,

    Thank you for my comment. I believe some of what you said may be applicable to the thread in binders, but here it is my turn to have my voice.

    I was not aware of the “rules” of the group, so breaking them is out of sloth or miseducation on my own part, not maliciousness.

    I assure you, and perhaps someone could speak to this: I HAVE begun my own thread many times. The situation is NOT the one you imagine, but the same thing happens – I am NOt aligned with allies. The exact same system happens – if people comment at all.

    You said something I would like you (or any other women of color writing in) to explore, and I am willing to take the heat.

    How am I, personally, “privileged” as a “white woman”. I know i’m asking a controversial question – but I literally do not know. Do you mean finically? Educationally? In the job market? Safety? Sexually? What exactly do you mean (other than a perception of comments on the internet).

    I am absolutely not being sarcastic. I want to learn.

    Jennifer

  • Jennifer Bartlett says:

    MS,

    I got distracted by your comment.

    I think you are right, and sometimes I fall into playing the “my oppression” is worse than “your oppression.” You are very correct. I want to stay away from that.

    This is merely about me and others with disabilities getting a voice. And all minorities supporting and understanding each other.

  • Christina says:

    I hear what you are saying Jennifer, and I can empathize. My status as a disabled person has had a far, far greater impact on my access to a quality life than being mixed race or being female. And yet, I feel frequently shut down when I mention that-it is never the right time or place to bring up disabilities as a civil rights issue. Part of the problem I feel, is that so many people, even those well versed in oppression politics, don’t even think that ableism exists, or don’t believe that one’s status as a disabled person could possibly have as far reaching effects as other aspects of oneself such as gender, race, sexual orientation, etc. I have actually seen online race and gender activists get downright offended when someone dares mention disability in the context of civil rights, or dares make parallels between the lives of disabled people and other oppressed groups. It is still a very “medical model” view of disability out there even in activist spaces. Like disabled people were the first to be exterminated during the Nazi holocaust, but that is rarely mentioned in history classes. Disabled people are also disproportionately affected by state violence, imprisonment, domestic abuse, it goes on and on… but there is still such a total lack of awareness of these issues, that it can be jarring when others completely dismiss your experience under the guise of privilege. The thing is, there is no easy formula to calculate the “total amount of privilege” one has because, context is important. Unfortunately, amibiguity is difficult, so a lot of people will distill any given situation down to one cause, yet this is rarely the case. As for a solution, I can only suggest using your voice as often as you can. For example, if people plan an event or discussion, ask them if it is accessible, and if not, why not. Or if people claim disability is not a civil rights issue, have ready links/references showing exactly how it is. People hate having their hypocrisy exposed (angry to be shut out of society, but fine with doing it to others), but do it often enough and hopefully the message will get through eventually.

  • Jennifer, Thank you for writing this. I have been physically disabled all my life. I write fiction and memoir, not poetry, but it is the same in many ways. Some editors are confused by my essays and give feedback that makes it clear they think my very point-of-view is illegitimate. But from time to time, an editor is excited for all the right reasons.

    Sandra

    P.S. Thanks so for Beauty is a Verb.

  • Lin Kaatz Chary says:

    I’m not sure whether I was part of the specific thread to which you refer, but I was definitely part of a another thread a while back in which a very similar discussion took place, and it was rough. I think that having this discussion in a FB thread is a very stark example of the difficulties of communicating through the written word sometimes, an ironic statement for me to say both of myself and other writers. I am a white woman, what is patronizingly today called a “senior”, and I use a walker which has really limited by mobility; I used to be a big walker. I speak up a lot about how inaccessible places are – as a small example, the conferences I attend where there’s no way in hell I can move between the banquet tables, let alone imaging the ability of a wheelchair to do so. Meeting rooms that are down stairs but without elevator access, on and on. The reality is that none of these things ever even occur to people, and the ADA is a joke in many circumstances as say, a hotel ballroom. So am I being picky and whiny about trivial things? I also don’t hear so well so I like to sit up front, also a big challenge in these situations. Should I just be sitting on the edges and shut up? Other conferees are wonderful and go out of their to help, but the set up is totally against us. I think the questions you raise Jennifer about privilege are interesting and relevant, and important, but I also think there is a time and place for them, and while I think it is unbelievably critical that our voices have to be raised and we have to make people listen to us and SEE us, I don’t think there was any way in hell that in the midst of the very heated discussion/thread of which I was a part, anyway, that was going to happen, I don’t think it could possibly happen and I don’t really think it was the place to happen. There was too much other stuff, very loaded stuff, going on. So while I get the frustration, I’m glad that you seem to get that it was a mistake. Segregating – and I use that word quite purposefully – the very uncomfortable discussion about physical ability differences and the ways those affect our lives into threads that are totally unrelated to the other threads in which we explore the historical institutionalized and unconscious and inherent prejudices with which this society inculcates us is not the way to do it. That is what I hear you saying, and I completely agree. I don’t think that anyone right now, however, is ready to hear white privilege equated with ableist privilege, either, however, and I don’t think they are the same thing, nor I think, do you. That leaves the question of where does it fit in? I think that is our challenge and we have to figure it out. In the end, though, I also have to say I don’t think it has anything to do with being a poet, although I am one as well, or a writer, or an artist of any kind – all of us with the sensitive souls (unfortunately I don’t have italics). You have written a challenging piece. I hope it keeps the conversation going.

    • Jennifer Bartlett says:

      Lin,

      Thank you for speaking up. I apologize for attacking you unjustly (if that was you).

      I think I do have a habit of interjecting into other issues. I do think that I do this not out of disrespect, but out of frustration. I had a bit of a breakdown today because I realized that the only way I garnered attention for this piece on Facebook was to link it to race, yet, again. Very frustrated.

      My therapist pointed out to me that all groups feel unheard from time to time. We are all looking for fairness and equality, and minorities in particular, can be non- tolerant of each other…all of this has make me really reconsider all of the ways I am privileged and all the ways that I am not. I think every human (or most) is privileged in flux. For example, I can walk around the Upper East Side easily (privilege) but people constantly stare a me (not). Or I can get on the bus from half fare, which I consider a priv. but then people who can stand much easier than me will often give me a hard time if I ask for a seat (not).

      I think what gets lost often in these discussion is an understanding of my speech impediment and facial expressions. The speech, even tho clear, takes a minute of adjustment and it’s difficult t explain to folks that I feel at the bottom of the ladder, even the disability ladder, because of people’s reaction to my voice. I’ve been turned down for 100s of jobs because of it. People have flat out told me they would not hire me. Dating, forget it! Once when I called to report a crime, the police said, “some drunk is on the phone” and hung up – the only two places my voice has not been an issue is calling the LGBT clinic where I go for therapy and the CP doctors office. So, other people (no matter their color or mobility) may have the privilege of being able to call to get a stove repaired without people mocking them or hanging up. We all have privilege from time to time, and I’m learning, even me.

  • Nica says:

    I think it’s a bit disingenuous to argue that because the author is white, that bringing up the topic of disability in a discussion about privilege, albeit specifically white privilege, can only be derailment or wrong place wrong time when the suthor has clearly made her point that more often than not, even the most enlightened people are guilty of ableism and ignorance about the privilege of access to and inclusion in society at large.

    Jennifer is smart enough to know that threads about race are lively and threads about disability are silent. The fact is, there is NEVER a right time when you are marginalized to the point of invisibility and when disability affects people of all races, gender identifications, and classes but is certain more marginalizing for the poor and people of color.

    All you have to do is look up the stats of disability and unemployment, disability and poverty to know that this isn’t some game in the oppression Olympics.

    As far as the secrecy of Binders goes, it’s no secret, and it’s not as if it’s been a safe space.

  • Nica says:

    I’d like to add that people often misinterpret exercising privileged for being bigoted. Privilege only means that you have benefits in society that you are unaware of, or that you have the luxury to forget. In the case of disabled, it should be obvious that there are daily challenges and struggles to move, to hear, to see, to breathe, to speak, to work, to learn, and we can deal with that, but to have to fight simply to be different and to make a life is a challenge that most typically abled people don’t experience and don’t suffer as a daily indignity. To have to prove that you have need but are capable is a full time job. This is why the Department of Rehabilitation exists.

    Every time I speak to someone in a noisy environment their immediate reaction is that I am somehow deficient, and I can see the discomfort and impatience. Sometimes I get impatient with them. I am smart. I just can’t @$&?!ing hear you!

    People reflexively understand DEAF. They mock you if you are hearing impaired. The don’t understand how the brain may process sound differently.

    If my mother weren’t deaf, if my daughter weren’t hearing impaired, I might feel that others were right, and that I am somehow a burden. But I know that it’s not my mother, and it’s not my daughter.

    You all need to change, and get conscious.

    Is it harder to be a deaf black transgendered person with chronic fatigue syndrome or a white male quadriplegic ? Does it really matter? Can’t we be kind and LISTEN?

  • I met you in NM; Lee I knew from UNM. Your note covers many subjects–suicide, pecking order among poets, disability. As a NM poet who has lived in Mexico a decade or so, I have often felt disabled by place; have rarely felt much recognition, etc. But the overall idea of poets hanging together is good. But as long as there are chancellors, lucrative prize winners, exclusive clubs, etc. there will be winners & losers. I suspect kindness & compassion among poets is devoutly to be wished, but competition for a small piece of the pie belies such an emphasis.

  • Nica says:

    One more thing I’d also like to add is this: We all know that effective activism requires that we disrupt the dominant discourse, and that is relative. If 350 people are discussing white privilege and , admittedly, repeating and rephrasing the same points, I think it is useful for Jennifer to point out the intersections between white privilege and ableism. She experiences daily micro-aggressions just like most disabled people do. You can’t respond to them all.
    But since discussions about disability can clear a room, she will take the conversation elsewhere and enlighten us all about the parallels. And they are real. If that is trolling or derailment, maybe silencing has necessitated it?

    It’s not Jennifer’s job to educate you, but she WOULD educate you. Most disabled people would. We cannot afford for you not to know about ADA, IDEA, our children’s IEP or 504 rights. And how easily every school, every workplace breaks the law. How they would rather you go away.

    Do you know how hard it is to find a teacher who knows how to teach literacy to a child with sensorineural hearing loss? How about an ocular motor dysfunction? No? But I can’t just tell you I don’t have time for you and to just google it. My child needs services. I need to advocate for her.

    Jennifer is fighting for the disabled as an identity that needs to be heard. The disabled aren’t just white or straight. My child hadn’t experienced racism yet, as a mixed race child. Ableism she experiences daily.

    Now poetry should be easier. Writing, however it occurs, through dragon software, or by typing with one finger, should be something that is accepted on it’s own merits. But just like with race, and gender, representation is an issue. That’s all we are saying.
    And that is all I am going to say.

  • Jennifer Bartlett says:

    Thank you to everyone who is speaking up.

    I want to let those of you who have challenged me about race, I have given it much thought in the past few days. I have learned a lot and examined my white privilege — something I hadn’t before.

    I would like to ask people to do me the same favor, and now turn it back to discussing disability.

    Do you teach disability literature in your curriculum? Do you ever catch yourself using blind, crazy, lame or retard as metaphors? If you consider disability to be a “personal problem” why? What are your own experiences either excluding or being excluded around the area of disability?

  • Jane says:

    hi
    I found research showing that writers as a group have much much higher suicide rates than other artists such as painters. I’m glad Jennifer brought up the issue. It’s important to reach out to others who you can form mutually supportive relationships with. Probably many suicides are preventable.

    I think people lash out due to insecurity. When people are feeling secure they are more kind and generous. As far as ablism, in some cases I think perhaps it’s a fear of (especially younger — as older people tend to have their own health issues) healthy people, fear of their losing their abilities, maybe at an un or sub conscious level. It’s one reason some blame others for their physical problems (I found that tendency more common in the U.S. than in Japan however — e.g. a cancer personality). So for example a white person may be afraid of black people sadly, but not afraid of themselves actually becoming black. But they may be afraid of being a target themselves or prejudice may help them feel superior. one book I read (Subjection and Subjectivity) reported that prejudice fulfills shameful psychological needs.

    Some people are more empathic than others. Even if you can’t reach everybody you can reach some people so it’s important to have your say. Some people you may not be able to reach today but they may change years from now. But good to be realistic about this. In Subjection and Subjectivity the author cited research putting people into two groups–ordinary discriminators who want to overcome their prejudices thru effort, and higher order discriminators who don’t think they need to or should try to overcome their prejudices. I think most people are in the former category however.

    I’m a poet with fibromyalgia and arthritis living in Japan originally from the U.S. In Japan tho most Japanese will see me first as a foreigner (I’m white so visually conspicuous here in the boondocks) I identify primarily as a woman because I find gender based oppression almost everywhere here in Japan whereas I don’t feel oppressed as a foreigner to the same degree at all. As far as disabled people more needs to be done here in Japan. I’m frequently verbally attacked as a woman, made to feel unwelcome in male dominated workplaces, verbally attacked when giving speeches about feminism and poetry at conferences, etc. As far as workplaces accommodating people with disabilities, some will do so but many will not. I found I and others usually could not ask for any special treatment for myself (even when needed) so any such requests had to be worded as if needed for others e.g. our university building needs an elevator in case we have students who can’t use the stairs (not: I am a teacher having trouble with the stairs) etc. or other people’s smoking may be bad for our students that have asthma (not “I have asthma” and am troubled by smoking).

    I belong to many activist groups in Japan and feel a kinship with other minorities and women here including the disabled community, other foreigners, members of the GLBT community, historically oppressed Japanese, Japanese women, etc. Before I moved to Japan I was keenly aware of sexism, heteronormativity, racism, ablism, and other -isms including cruelty to animals in the U.S. After moving to Japan I deepened my understanding of these and also became an environmentalist and 4 years ago a vegan. Ideally compassion would have no boundaries– we all fail at times in our conduct matching our ideals, but so long as we try it’s a good thing. People have to be forgiving but in the case of some people I just tell myself to use my energies more wisely or go someplace where I can be myself or be heard. But it’s important too not to give up the fight–or so I think–

    I interviewed Jennifer recently — if of interest you can read our conversation in Jacket2 online:

    http://jacket2.org/category/commentary-tags/jennifer-bartlett

    best wishes
    Jane

  • Susan says:

    About White privilege….. as a white disabled woman who parents a mixed race disabled son, I do experience White privilege. Here’s an example of his childhood I recently posted on another blog. When my son was treated unfairly as a child at school or at a store or at a recreational activity – as a dark skinned child who parents were unknown – I could intervene and get needed changes made so that he was treated fairly. I saw Black and Latino parents do the same without success. I could then intervene on their behalf and get the fairness they deserved at least for awhile. I am not talking about a one time event. I am talking about many times every year of his school life.

    I also know that as a White disabled woman I often get services offered to me that my Black and Latino disabled friends need and are never offered and have been told do not exist when they do ask about them. There is racism within the disability community and the service providers they use.

    • Nica says:

      This is definitely true. I don’t think anyone out to imply that the problems of disability are not exacerbated by systemic and institutional racism and white privilege and by poverty and by language barriers.

      Living in San Francisco, wehave access to very fine free advocacy services with translation services—assuming you were lucky enough to know about them. I know many dedicated case workers who try very hard to make special education services equitable, to inform families that special ed means services, special ed not a place, but they are there because the system
      is NOT equitable. That’s as much about the notion that the disabled have rights to education because it is mandated, not because schools truly see disabled students as capable, deserving learners.

  • Jennifer Bartlett says:

    I just want to post one more thing, then I’m off to po-land. Someone Facebook gave me an article by Peggy McIntosh with a white privileged list. I took out a few items, there are 50, and changed the word/idea race to the word disability (specifically my cerebral palsy). I wanted to be rigorous with myself and explore the ways that I am privileged and expose the ways I am not and look at the commonalities. In order to be explicit about my impairments – I have an akward gait, often strange facial expressions and a clear, but distinguished speech impediment.

    1. I can if I wish arrange to be in the company of people of my disability most of the time. NO

    2. I can avoid spending time with people whom I was trained to mistrust and who have learned to mistrust my disability or me. NO

    3. If I should need to move, I can be pretty sure of renting or purchasing housing in an area which I can afford and in which I would want to live. THIS ONe I CAN do, but not if I used a wheelchair.

    4. I can be pretty sure that my neighbors in such a location will be neutral or pleasant to me. Not necessarily.

    5. I can go shopping alone most of the time, pretty well assured that I will not be followed or harassed. – YES, this I can do, however, if I used a chair I could not enter 80% of the stores in my area.

    6. I can turn on the television or open to the front page of the paper and see people of my cerebral palsy widely represented. (ha..ha, well there was that one person in the 1980s.)

    7. When I am told about our national heritage or about “civilization,” I am shown that people of my disability made it what it is. NO

    8. I can be sure that my children will be given curricular materials that testify to the existence of disability.
    NO

    10. I can be pretty sure of having my voice heard in a group in which I am the only member of my disability. NO

    11. I can be casual about whether or not to listen to another person’s voice in a group in which s/he is the only member of his/her race. This i don’t know.

    12. I can go into a music shop and count on finding the music of my disability represented, into a supermarket and find the staple foods which fit with my cultural traditions, into a hairdresser’s shop and find someone who can cut my hair. Yes.

    13. Whether I use checks, credit cards or cash, I can count on my disability not to work against the appearance of financial reliability. YES

    14. I can arrange to protect my children most of the time from people who might not like them. YES

    15. I do not have to educate my children to be aware of systemic ableism for their own daily physical protection. Not for protection, but for constant questioning OF HIS MOTHER.

    16. I can be pretty sure that my children’s teachers and employers will tolerate them if they fit school and workplace norms; my chief worries about them do not concern others’ attitudes toward their race. YES I’m lucky

    17. I can talk with my mouth full and not have people put this down to my disability. NO

    18. I can swear, or dress in second hand clothes, or not answer letters, without having people attribute these choices to the bad morals, the poverty or the illiteracy of my race. YES

    20. I can do well in a challenging situation without being called a credit to my disability. God NO

    21. I am never asked to speak for all the people of my disability group. -actually, I’m not because my idea are too extreme.

    22. I can remain oblivious of the language and customs of persons of color who constitute the world’s majority without feeling in my culture any penalty for such oblivion. Yes I can and that’s fucked up.

    23. I can criticize our government and talk about how much I fear its policies and behavior without being seen as a cultural outsider. NOPE – particularly pertaining to selective abortion and euthanasia.

    24. I can be pretty sure that if I ask to talk to the “person in charge”, I will be facing a person of my disability. I’m pretty sure I won’t.

    25. If a traffic cop pulls me over or if the IRS audits my tax return, I can be sure I haven’t been singled out because of my disability. Luckily, this is true.

    26. I can easily buy posters, post-cards, picture books, greeting cards, dolls, toys and children’s magazines featuring people of my disability. NO

    27. I can go home from most meetings of organizations I belong to feeling somewhat tied in, rather than isolated, out-of-place, outnumbered, unheard, held at a distance or feared. REALLY? NO

    31. I can choose to ignore developments in minority writing and minority activist programs, or disparage them, or learn from them, but in any case, I can find ways to be more or less protected from negative consequences of any of these choices. NO ONE READS DISABILITY WRITING!

    33. I am not made acutely aware that my shape, bearing or body odor will be taken as a reflection on my DISABILITY. NO

    34. I can worry about disability without being seen as self-interested or self-seeking. NO

    35. I can take a job with an affirmative action employer without having my co-workers on the job suspect that I got it because of my disability.
    (There is NO affirmative action for people with cerebral palsy.)

    37. I can be pretty sure of finding people who would be willing to talk with me and advise me about my next steps, professionally. (You’re kidding, right? )

    38. I can think over many options, social, political, imaginative or professional, without asking whether a person of my disability would be accepted or allowed to do what I want to do. HUH? THIS IS SO IMPOSSIBLE I DON’T EVEN GET THE QUESTION.

    39. I can be late to a meeting without having the lateness reflect on my disability. NOPE

    41. I can be sure that if I need legal or medical help, my disability will not work against me. NO

    42. I can arrange my activities so that I will never have to experience feelings of rejection owing to my disability . In fairy land!!!

    44. I can easily find academic courses and institutions which give attention only (ANY!!!) to people of my disability. Only if it’s disability studies, wait! Not even then.

    45. I can expect figurative language and imagery in all of the arts to testify to experiences of my disability. (Do you mean “crippled” “blind “deaf” retard” Lame??? YES these are used all the time – o but only to refer to negative stuff.)

    46. I can chose blemish cover or bandages in “flesh” color and have them more or less match my skin. (FINALLY YES)

    47. I can travel alone or with my spouse without expecting embarrassment or hostility in those who deal with us.( Sort of. They always ask him questions instead of speaking to me, but I guess they are not hostile.)

    48. I have no difficulty finding neighborhoods where people approve of our household. Luckily yes.

    50. I will feel welcomed and “normal” in the usual walks of public life, institutional and social. HAHAHA!

  • Adam Strauss says:

    I admire this essay and comment stream; and it is really, really nice to read someone angry at how often the word lame is used as if it’s politically neutral rather than wretchedly judgmental. This is the only forum I have ever read where this issue of language has been addressed. I find lame’s connection to the word straight notable: there’s noting neutral about the word straight, and yet it’s been deemed politically neutral by, well, seemingly everyone: Homosexuals seem to default to it at equal rates as Heterosexuals. Un-Marked judgmental language is so important to examine, I think! Thank you JB and all who have commented! And, for one more squeak: it’s so disgusting that retarded has become a diss which displays no awareness of its relation to actual lives and political implications, as if there is no demographic for whom the term has a potentially much crueler relation to. Sigh, now I’m onto how this fits with gendered language which has been grossly neutralized: “life’s a bitch,” etc.

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