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I’m a big fan of Miss Conduct over at the Boston Globe, and she got a question recently that comes up a lot in advice columns and spaces like this one:
I am disabled by an incurable disease. On the outside, I appear OK. But on the inside, I am slowly dying. People ask me what I do for work. When I say I am disabled, they seem to require a further explanation. I would like to keep my affliction private, so I would like an appropriate response. J.M. / Essex
Here’s how she responded:
J.M., I am in awe of your courage. But you probably don’t want people to be in awe of your courage, or shamed by your stoicism, or inspired by your grace, do you? You probably just want to be J.M. from Essex, who can bloody well make small talk like everyone else. What else are you doing besides tending your illness as best you can? If you’re well enough that people don’t realize you are sick and well enough to write to me, you are probably engaged in some kind of activity – crafts, reading, going to movies, listening to music, following sports. People aren’t prying into your work or health situation, necessarily; they’re probably only looking for some conversational fodder. So give it to them: “I’m not working right now because I’m dealing with some health problems – that I’m really tired of talking about! But I’ve been listening to books on tape lately and really getting into the No. 1 Ladies’ Detective Agency series. Have you ever read those?” (or whatever is appropriate for your interests). If people keep pushing (most won’t), repeat that you’re not interested in discussing work or health, but how ’bout them Sox? If they still pry, say, “I think I left the oven on” (or some similarly nonsensical excuse) and wander off.
Now, there are some things in this response that make me a little tingly in an irked way, but that’s not actually why I’m writing this post. I’m writing this post because, well, y’all are pretty awesome when it comes to crowdsourcing solutions and ideas, and I’ve got two questions for you:
- Have you/do you use conversational redirections like changing the subject, ignoring the question, etc., and if so, has it worked/does it work?
- How do you deal with situations like these where people believe that your disability makes you a subject for open quizzing and discussion?
And, a followup, because this is something I always have trouble with: What exactly is ‘small talk’?
Warning: Offsite links are not safe spaces. Articles and comments in the links may contain ableist, sexist, and other -ist language and ideas of varying intensity. Opinions expressed in the articles may not reflect the opinions held by the compiler of the post and links are provided as topics of interest and exploration only. I attempt to provide extra warnings for material like extreme violence/rape; however, your triggers/issues may vary, so please read with care.
Photo from the Disability Action Hall’s Eighth ‘Speak Out’ event, held in 2006. By Flickr user Grant Neufeld, Creative Commons License.
Tasha Fierce at Red Vinyl Shoes: My Kind of Crazy
I used to talk about mental health issues a lot back in the day, but haven’t lately because I got tired of feeling like a downer all the damn time. It is really important to bring mental health issues to light because the more we talk about them the less stigmatizing the diagnosis becomes, but constantly being the ambassador from crazyland is tiring mentally. You don’t always have to be the one to suffer fools.
So, for me, one of the very hardest, most awfulest to try to overcome parts of FA was the idea that I had to listen to my body and trust that I was interpreting its messages correctly. For an example: I have a proliferation of allergies, both food and environmental. Before I pursued actual useful medical treatment (as opposed to being told the allergies would go away if I lost weight), I had no goddamn idea if I was having an allergy attack or if I had a cold. In fact, it was so impossible to tell that everything read as allergies.
Richard Bales at Workplace Prof Blog: DOL Releases Online Disability Law Advisor
The interactive, online Disability Nondiscrimination Law Advisor helps employers determine which federal disability nondiscrimination laws apply to their business or organization and their responsibilities under them. To do this, it asks users to answer a few relevant questions and then generates a customized list of federal disability nondiscrimination laws that likely apply, along with information about employers’ responsibilities under each of them.
Diana Sweet at The Raw Story: US school for disabled forces students to wear packs that deliver massive electric shocks (warning, graphic descriptions of abuse of people with disabilities) (via Planet of the Blind)
Noting that it believes United States law fails to provide needed protections to children and adults with disabilities, MDRI calls for the immediate end to the use of electric shock and long-term restraints as a form of behavior modification or treatment and a ban on the infliction of severe pain for so-called therapeutic purposes.
Beck Vass at the New Zealand Herald: ‘Nightmare’ at petrol station for amputee
When double-amputee Brian Portland went to buy petrol at a BP station in South Auckland, he was told he had to pump it himself.
Then, Mr Portland was told he couldn’t use his wheelchair on the forecourt because it breached health and safety regulations.
Wheelchair Dancer: Sins is Hiring
We present multidisciplinary performances (video, poetry, spoken word, music, drama, and dance) by people with disabilities for broad audiences in the San Francisco Bay Area and elsewhere; organize multidisciplinary performance workshops for community members with and without disabilities; and offer political education workshops for community based and educational organizations that share our commitment to social justice principles as a means of integrating analysis and action around disability, race, gender, and sexuality.
I’m leading off today’s dance videos with a lovely solo ballet piece:
Performers in Sweden Signing and dancing:
More performers using Teckenspråk, Swedish Sign Language:
Gestim, a Deaf dance group, performing in Bulgaria:
A recent study published in the Archives of Internal Medicine has attracted a lot of media attention. ‘Chocolate and Depressive Symptoms in a Cross-sectional Analysis‘ has been written up in a number of newspapers here in the United States, often in the ‘oddly enough’ news sections, which is where ‘whimsical’ news about scientific studies often seems to end up.
There’s kind of a long history of media outlets writing up studies on food and twisting or ignoring the conclusions of those studies. Contradictory information about food is readily available through the media and sometimes there are very serious problems with the framing of these ‘oddly enough’ food stories. Like the claims that red wine is good for your heart, which ignored the fact that most studies supporting this claim pointed out that you would have to drink a lot of red wine to achieve cardiovascular benefits.
The chocolate study involved 1018 subjects from San Diego, 931 of whom were not taking antidepressants. Researchers used the Center for Epidemiologic Studies Depression Scale (CES-D) to gauge levels of depression among the participants, and then collected information about chocolate consumption. What they found is that people with higher scores on the Scale tended to consume more chocolate. For people with very high scores, chocolate consumption was doubled.
Higher CES-D depression scores were associated with greater chocolate consumption. Whether there is a causal connection, and if so in which direction, is a matter for future prospective study.
The media jumped on this study with headlines like ‘Study links chocolate and depression.’ ‘Study: Chocolate and depression go hand in hand.’ ‘Say it ain’t so: Study links chocolate to depression.’ And so on. Some articles went right ahead and used the ’cause’ word.
These articles theorize that either depression triggers chocolate cravings, or chocolate makes people depressed. They’ve made the classic mistake of conflating correlation and causation. abby jean has talked about this problem elsewhere on FWD, discussing the problem of bias in studies and bias in the way people talk about scientific studies. Recently, I discussed some of the problems with tests administered to measure levels of depression in ‘Internet Use and Depression.’
There are a couple of questions which should be asked about a study like this. The first is how the sample was chosen. Because I can’t access the full text, I can’t answer this question (someone who has read the study is welcome to chime in in comments). One thing which is notable is that this study took place in the United States. Here in the States, eating chocolate to improve mood is a learned behaviour, and thus I can’t say that I was terribly surprised to learn that people in the US who appear to be depressed are eating more chocolate. Since this study took place in a country where people believe that there is a link between chocolate and mood, it’s possible that some observer bias was involved in this study.
People believe that chocolate will make them feel better when they’re down1. In other cultures, there are other comfort foods which people eat to make themselves feel better. It would be interesting to see a cross-cultural study. As it stands now, we know that chocolate consumption appears to be higher in depressed residents of San Diego, California.
Another question about this study is whether the researchers controlled for other dietary factors or behaviours. Apparently they did control for ‘common’ factors like caffeine and carbohydrates, but it’s unclear how far they drilled down. Is it possible that people with depression also eat a lot of, say, peas? Brazil nuts? It’s impossible to control for everything, of course, but food and diet are complex issues and we’re still learning a lot about how food works, the compounds in food, and how different foods interact.
Furthermore, the study was not long term. More meaningful results might be obtained with a more extended study tracking people over months or years. It would also be immensely helpful to have subjects keep complete food and activity diaries to generate a spread of data which could be used to look at other things which might be correlated with depression.
Chemically, chocolate is incredibly complex, especially when you start talking about all of the varieties of chocolate available. There could be something going on here, but it would take a lot more research to find out.
- The jury is out on this one science wise. Some studies suggest that compounds in chocolate are mood elevators although they may work only in the short term. Others suggest that there’s no effect on mood. Others suggest that compounds in chocolate might actually work the other way around. And, of course, many studies like to take the time to point out that chocolate makes people fat and fat is bad, ergo, people who eat chocolate will be sad because they are fat. ↩
It’s Blogging Against Disablism Day 2010, and I would highly recommend checking in at Diary of a Goldfish to see other posts on the theme!
A question that I get from a lot of nondisabled folks as they are starting to explore ableism and interacting with people with disabilities is ‘I really can’t stand it when someone appears to be in need of help, and I want to offer assistance, but I don’t know how. Can you tell me how to politely ask someone if help is needed or wanted?’ The desire to offer assistance is a natural one, but it often expresses in really offensive and sometimes dangerous ways (‘here, let me push your chair for you!’) so this is a question I don’t mind answering!
And I’m going to start my answer with an anecdote from my own life which I think illustrates a reasonably good example of how such interactions can go:
I was in line at the grocery store, and I noticed a wheelchair user behind me with a basket. I quickly observed that his chair was low and the conveyer belt was high, and it might be difficult for him to get his groceries up onto the belt, so I said:
‘Would you like assistance with that?’
And he said:
‘No, thanks, I kind of just shove the basket up there and let the checker deal with it.’
And I said:
And then we had a conversation about fruit.
Note that this interaction had several characteristics. I observed something which I thought might be an issue and offered assistance. I did not yank this gentleman’s basket out of his hands. I didn’t shout at him or talk very slowly as though I was afraid he wouldn’t understand me. I looked at his face, not his chair, while we were talking.
And when he said ‘no, thanks,’ I didn’t force the issue. I gracefully acknowledged his equally graceful decline of my offer, and we went on with our days. In other words, we had an interaction where we both treated each other like human beings, equally deserving of courtesy, respect, and autonomy.
When you want to offer assistance to someone, offer politely, and don’t swoop in as though you are assuming that your offer has already been accepted. Never touch a person’s body, service animal, or assistive device without permission. If that person says ‘no, thank you,’ say ‘ok.’ If that person says ‘yes, please,’ pay attention when that person explains how you can be of the most help.
Over at Jesse the K’s place, a great conversation took place recently in which we talked about the language people use when offering assistance, and what a difference it makes:
When someone says “Can I help you with that?” my negative response can be interpreted as “you’re not capable of helping me” (which many folks would perceive as rude). To me, that question is more about the asker’s need to help than my requirements for assistance. When someone says “would you like a hand with that?” saying “no” focuses on me, not the asker. (Jesse the K)
When framing offers of assistance, it is tremendously beneficial to phrase them in a way which centers the person who appears to need help, rather than the person offering it. Saying ‘Do you need assistance?’ or ‘Do you need a hand with that?’ sounds very different from ‘Can I help you?’ In addition to watching your literal language, it helps to watch your body language and tone; are you using a sing songy voice? Are you talking any differently from the way you would talk to anyone else? Are you staring at a physical impairment or assistive device while you talk?
The brief version of the answer to the question of ‘how can I offer help without being intrusive or offensive?’ is:
- Address the person, not the impairment, using language which centers that person.
- If the answer is ‘yes, please,’ pay attention so that you know how to help.
- If the answer is ‘no, thank you,’ say ‘ok,’ or something along those lines.
In respect for the spirit of Blogging Against Disablism Day, particularly the language amnesty, this is designated as a 101 thread. People with all levels of experience with disability activism and the disability community are encouraged to comment and exchange questions and ideas.
(Crossposted at this ain’t livin’.)
Warning: Offsite links are not necessarily safe spaces. Articles and comments in the links may contain ableist, sexist, and other -ist language and ideas of varying intensity. Opinions expressed in the articles may not reflect the opinions held by the compiler of the post and links are provided as topics of interest and exploration only. I attempt to provide extra warnings for material like extreme violence/rape; however, your triggers/issues may vary, so please read with care.
From front, Kong Veasna, Kim Sathia and Mao Tipmony performing at the Spotlight festival in Phnom Penh. (Vandy Rattana/Epic Arts Cambodia) (Creative Commons License, Cambodia Trust)
Reminder: Tomorrow is Blogging Against Disablism Day! You can check in at Diary of a Goldfish to see all the submissions (and submit your own work if you are participating). Many, many thanks to The Goldfish for all of the organising work which goes into this.
Being physically disabled and having mobility needs that are considered “special,” means that I often need people to help me carry things, push my wheelchair, park my car, or lend me an arm to lean on when I walk. It means that much of my accessibility depends on the person I’m with and the relationship I have with them. Because most accessibility is done through relationships, many disabled people must learn the keen art of maintaining a relationship in order to maintain their level of accessibility. It is an exhausting task and something that we have had to master and execute seamlessly, in many of the same ways we have all had to master how to navigate and survive white supremacy, heterosexism, our families, economic exploitation, violence and trauma.
Wheelchair Dancer: Arizona’s Immigration Laws
Two questions: what kinds of offenses make people removable? (Note: even the very word choice — removable — makes it sound like you are taking out the trash.) Turns out that besides the biggies, like you know, murder, the case for removability can be built from smaller things such as traffic offenses. Without a warrant? Perhaps that’s one thing if you see a person on the street robbing a bank, but I can see it being used as an excuse to enter homes, to conduct raids, to begin to hunt people down. I can see it being used as a way of legalizing the immigration equivalent of witch hunts.
Tanya M. Luhrmann at the American Journal of Psychiatry: The Protest Psychosis: How Schizophrenia Became a Black Disease (book review, warning, some problematic word use)
Perhaps the explanation is that it is so morally distressing to confront the costs of human social life. This, after all, was the story of the 1965 Moynihan report—a report that documented the real challenges of African American life in the inner city and was roundly criticized as racist and dismissed. Racial prejudice, after all, is something that readers of a book like this can act on or at least believe they can alter. Deep social inequality that leaves its marks on the body and mind is far more difficult to uproot. There is little doubt, however, that those marks are real.
Kavita Ramdas at TED Talks: Radical women, embracing tradition (video and transcript)
Why is it that women are, on the one hand, viciously oppressed by cultural practices, and yet, at the same time, are the preservers of culture in most societies? Is the hijab or the headscarf a symbol of submission or resistance? When so many women and girls are beaten, raped, maimed, on a daily basis, in the name of all kinds of causes, honor, religion, nationality, what allows women to replant trees, to rebuild societies, to lead radical, non-violent movements for social change?
Denise Grady at the New York Times: Second Opinion: In Reporting Symptoms, Don’t Patients Know Best?
“There is a sensibility among some old-school clinicians that they have a better sense of their patients’ experience than patients do themselves,” Dr. Basch said. “But doctors and nurses bring their own biases to the evaluation. They might say, ‘Mrs. Smith always exaggerates her fatigue — she says 9, but I rate it a 6.’ ”
Kaitlyn at Oh Money Trumpets: Medication for Bipolar Disorder and TV Shows
But with my mood swings, the “alien” idea made more sense. A better metaphor is a switch. A switch is flicked, I get so pissed off. Switched again, I don’t want to do anything. Switched again, back to baseline. No control. Which got a bit annoying, because I’d be mad at somebody. They’d get mad at me for being mad at them for no reason. Then I’d get mad at them for being mad at me when I had no control over the original anger!
The 24 April edition of Dear Abby led with this letter:
Dear Abby: I am an average 17-year-old girl with a big problem. A few days ago, my cousin’s boyfriend touched me inappropriately. It took a few seconds for me to realize what was happening and stop him. I got up and left the room.
I don’t want to tell my mom because she shares what we talk about with other people. I don’t want to tell my cousin because she loves her boyfriend, and if I ruin this for her, she’ll never speak to me again. I have seen her do it with other people.
My cousin visits my house every day with her boyfriend. I have been leaving for hours so I won’t have to see him. Please help me. What other option do I have besides telling somebody? — Staying Silent in Guam
Dear Staying Silent: You have two options. You can remain silent and let your cousin marry a man who has so little self-control that he would not only hit on another woman, but one who is a close relative of hers. Or you can tell your parents what happened so your cousin can be warned, and possibly save her from a world of heartache later on. Please be brave and do the right thing.
What I find fascinating about Abby’s response here is that she doesn’t name, identify, or discuss what happened to Staying Silent. The response is framed as ‘you wouldn’t want your cousin to marry a guy who would cheat on her, right?’
As opposed to ‘you wouldn’t want your cousin to marry someone who commits sexual assault, would you?’
Hrm, I wonder why that might be. Here we have a girl who describes being ‘touched inappropriately’ and says that she is afraid to talk to someone about it. I feel like a supportive and helpful response would name what happened—sexual assault—and provide the reader with resources such as referrals to sexual assault crisis centers or organizations like RAINN. Staying Silent did have another option; talking with a counselor instead of a family member about what happened, and maybe talking with the counselor about a way to bring this event up with her family.
Instead, Dear Abby didn’t address the actual event which occurred and informed Staying Silent that she should ‘be brave’ and ‘do the right thing’ by telling her parents. Refusing to name sexual assault is one of the reasons it is so hard to address. Calling sexual assault ‘hitting on’ someone makes it that much harder for a victim to identify it in the future; when Staying Silent is groped on a bus, is that being ‘hit on’? How about when she’s pressured into unwanted sexual contact by a partner?
How monumentally unhelpful.
Staying Silent, if you’re out there and you happen to be reading this: What happened to you was sexual assault. It was not ok. Some resources you might find helpful are the Guam Coalition Against Sexual Assault and Family Violence and the Healing Hearts Crisis Centre, both of which offer counseling services.