• About
  • Projects & Research
  • Publications
  • Archives
  • Categories
  • Secondhand Sufferers

    2009 - 12.05

    I’ve stopped trying to find blogs by people that share by disabilities. Searching “[condition/label] blog” doesn’t send me to blogs of people with that condition or label (hell, I might not even get a blog). No, I get to see the ugliness that is “Secondhand Sufferers.”

    The concept of Secondhand Sufferers developed from several years of attempting to find blogs by people with attention deficit disorder. Rather than get blogs by people with ADD, I get bombarded by parents, teachers, doctors, and others affected by people with ADD. These typically refer to children with ADD and focus on the negatives of the disorder.

    Or, to be more precise, the negatives of having to put up with someone with  ADD. The underlining tones are that people with ADD are tiresome, irritating, unruly. But, damnit, they’re going to be helped. Helped being regulated to making people with ADD more normal, behaving within social constraints, etc.

    The emphasis isn’t on whether the person in question wants help, let alone the help of the Secondhand sufferer. The person with a disability is pushed to the background because their condition is “hurting” them. Hurting the person with a disability as defined as “being a burden or irritation for an able bodied person, typically a family member, coworker, or friend.”

    So, what do these Secondhand Sufferers complain about anyway?

    My AD/HD Child Won’t Do His/Her Homework,Chores, or What I Tell Them to!

    First off, this complaint assumes that a child’s disability is the cause of the problem. Why mention it at all? Children independent of disability may be disobedient.

    And the solution? Be stricter and enforce discipline more. This delves into the pseudosceptical belief that children with ADD don’t really have a disability, they’re just undisciplined. In addition, this tactic doesn’t address the why of the child’s behavior, because it’s just their ADD, right? Well, no, not necessarily.

    In my case, if someone wants me to do something they need to tell me: why they want it done, when they want it done by, why the hell I should be the one doing it, and who it impacts and how. Sorry, but I’m not going to waste my time and energy on something that I don’t see as important.

    X Cures/Treats Y

    Alright, there’s lots that’s been said already on why this isn’t okay. So, why is this relevant to a discussion of Secondhand Sufferers? Because many of these people are parents who may implement these “treatments.” Again, there is no statement as to whether the person with a disability accepts the treatment or is in a position to denigh it.

    This is particularly dangerous in regards to diet changes to treat symptoms. Diet changes should be talked over with a doctor, not accepted because someone on the Internet claims that sugar causes hyperactivity, gluten causes autism, etc. In regards to children, they most likely do not have the skills, knowledge or finances to prepare their own healthy, balanced meals and may be forced to eat a questionable diet or starve.

    He/She Won’t Do Anything, Stays on the Couch All the Time, etc.

    More common with pain disorders, mobility limitations, depression, chronic fatigue, and other conditions that limit a person’s energy or mobility, this complaint assumes that the person in question doesn’t need this additional down time. For anyone that thinks lying around is fun: bedsores hurt, boredom is often, and bathroom and eating tasks are fucking hard in a stationary position.

    In addition, the Secondhand Sufferer blames the person with a disability for the Secondhand Sufferer not going out or doing X activity. The Secondhand Sufferer doesn’t just do this activity by/for themselves despite being perfectly capable of doing so.

    And the person with a disability already feels bad about being limited in their activities. This isn’t to say that the person wants to be pitied, but the activities he or she does do must be pretty damned important to them.

    How Not to be a Secondhand Sufferer

    That’s just 3 cases that I can relate where a non-disabled person has, in person, demonstrated that they “sufferer” because I have a disability. So, how should one behave to not end up sounding like a Secondhand Sufferer?

    1. When complaining about a person, don’t mention his/her disability. It isn’t relevant and is enforcing a stereotype of people with a disability. This is a person not a disability that is being talked about.
    2. Don’t suggest or enforce a treatment for a person unless you are this person’s physician. It assumes that you know what’s best, which isn’t the case and insinuates that the person’s symptoms somehow affect you.
    3. Don’t assume someone gets angry at you because of their mental illness. As surprising as it might be, people (even people with mental illness) have the right to be angry at you. Yeah, maybe you don’t understand why they would be angry, but that doesn’t mean their anger is wrong.
    4. Having to change your habits, work styles, or settings to accommodate another person isn’t a fucking hardship for a non-disabled person. I know doing things differently is scary, but just think of it as a learning experience.
    5. Believe a person when they say they need something. If it’s a few hours lying down, prescription pain killers, a larger font size, lactose-free meals, etc., just believe them. Telling a person that they’re making you do extra work, ruining family-time, not pulling their weight, lying or that it is “all in their head” isn’t constructive.

    Any other suggestions? Or Secondhand Sufferer sightings?

    Presentation

    2009 - 12.03

    Today, I’m to present my embedded system project. Because of energy drain on the battery, I was unable to integrate a camera into it for gesture detection. (This also means I have until Tuesday to do an entire A.I. project from scratch and write another presentation.

    I don’t do well with presentations. And for those that are curious, I have never been allowed an alternative means of earning my grade.

    “Tough it out.”

    “You’ll get better with practice.”

    “It’s only [N] minutes! It’ll be over fast.”

    “You’re smart. Why can’t you do this?”

    I spend the time before presentations thinking about all the things that I could do wrong. I will sometimes get sentences backwards: “The ball threw the boy” and the like.

    Being the center of attention feels like being  on trial to me. It doesn’t matter all the correct, informative, and useful things I may say. One error proves that I’m not as good as I had seem. That I’m faking my knowledge. I’m more judge-mental of myself than others. I know this, but I don’t feel that it’s really true.

    … I don’t like powerpoint slides. Yet, it’s expected that I use them anymore. I’m calmer and speak more clearly when ad-libbing. The absence of slides has become indicative of being unprepared to many people, so I’m forced to use them.

    The more I think about presenting, the more anxious I’m getting. And the anxiety will make me screw up. It’s a vicious cycle.

    On more than one occasion, I have been in tears when presenting. These result in a lower grade for me, independent of doing more research than my peers. Being able to explain to others orally has become more important than the quality of the work. I must not know what I’m talking about if I have difficulty explaining it in a neurotypical fashion.

    I associate textures, animals, and a few adjectives rather than pictures to most of the things I think about. If I’m asked to describe what a person looks like, I’m more likely to refer to an animal than recall what color their hair is.

    If I don’t think the same, I fail to see why I am forced to explain in their terms rather than my own.

    I’m getting angry on purpose again. It’s very easy to dismiss anxious feelings when one gets angry. Becoming angry is easy when one realizes one’s suffering isn’t fair or acknowledged.

    Seperate but Equal

    2009 - 12.02

    (I’ve been lying on the couch unable to do much for nearly 2 weeks. Some way to spend the holiday. :-/)

    So, I’m writing this in part because I was inspired by  urocyon’s post “[L]ook who they are and how many of them are saying it” (routed by today’s “Recommended Reading” by FWD/Forward, a disability and feminism blog). This post relates the negative reactions and internalized messages that occur with people when they request help/accommodation.

    Accommodation does not mean separate but equal.

    I think this may be where some of the issues people have with accommodating people with disabilities. Accommodations are mentally construed as being treated separate from the mainstream. And everyone knows that “separate but equal” treatment is inherently unequal.

    Accommodations are not the norm and are thereby viewed as .

    This thought process is flawed. First, treating people the same isn’t necessarily treating them equally and fairly. Second, accommodations, for the most part, wouldn’t be very useful for an able-bodied person. That’s why these accommodations aren’t inherently in place; if most people don’t need something, no one must need it. Must be more of a perk, right?

    A ramp isn’t necessary for people that are able to walk without assistive technologies, pain, or other difficulties. Extra time on exam has been shown to not affect scores of non-disabled test takers. A drop-down counter doesn’t help people of average height. Having subtitles on films doesn’t change the interpretation for someone who can hear clearly. Braille and audio transcriptions do not stop a sighted person from reading.

    Having these accommodations in place doesn’t negatively affect  able-bodied persons. But, not having them does negatively affect the lives of people with disabilities. It isn’t separate but equal to have accommodations available; it’s bringing persons with disability into mainstream settings.

    Ableism 101

    2009 - 11.17

    So, most people are keenly aware that racist and sexist comments are not politically correct or generally acceptable (I will state that these beliefs are still very strong). Sadly, classist, xenophobic, transphobic, heteronormative, and to some extent homophobic prejudices are still pretty much the norm.

    I’m not going to be talking about those today. I’m talking about ableism. Ableism in the simplest meaning are societal prejudices about people with disabilities. It takes the assumption that being able-body, having a neurotypical mindset, boundless physical and mental endurance, etc. are normal. People that don’t fall into this category are abnormal.

    The United States Census bureau estimates that there are 51 million people with disabilities in the US, placing it as the highest populated minority group. When you picture someone with a disability, what do they look like? Let me guess: a man using a wheelchair of European descent.

    For people with these obvious signs of disability (also known as assistive devices), there’s no pretending to be non-disabled. That said, two-thirds of disabled persons have an “invisible disability;” they use no cane or hearing aid. They pass as being normal; they can pretend to be part of the privileged able-bodied population.

    So, what else is there to an ableist mindset?

    I’m not disabled. Disabled rights do not mean anything to me. I have had a poem, memorized since before I learned I was disabled that I feel is relevant:

    First, they came for the gypsies, and I didn’t speak up because I wasn’t a gypsy.

    Then, they came for the Bolsheviks, and I didn’t speak up because I wasn’t a Bolshevik.

    Then, they came for the Jews, and I didn’t speak up because I wasn’t a Jew.

    Then they came for the trade unionists and I didn’t speak up because I wasn’t a trade unionist.

    Then they came for the Catholics. I didn’t speak up then because I was a Protestant.

    Then they came for me, and there was no one left to speak up for me.

    [Attributed to Pastor Martin Niemöller. This is not his preferred version, but it is the one I learned.]

    Do not ever assume that something does not apply to you. It very well may one day, and in the case of disability, it is very likely it will.

    Dying is better than having a disability. How many people have uttered “I would rather die than” be blind, be in a wheelchair, etc? It assumes that people living with their disabilities are either admirable for “persevering” or  too cowardly to take their own lives. Heaven forbid that someone just live their life.

    Invisible disabilities do not exist. Yes, they do exist. But, hey, feel free to ignore medical evidence and believe that everyone is lying.

    That not being able-bodied is a tragedy which one “suffers” and must desire a cure. Perhaps initially, but one eventually needs to accept reality. At which point, it’s not suffering; it’s a way of being. Cures are just not going to happen with a lot of disabilities; a person accepts this and enjoys their life to its fullest.

    Disabilities, particularly invisible ones, are easy to fake. First, no it’s not, particularly not for a lifetime. Second, there isn’t any real benefit. A person with a disability is ridiculed for it. Extra time on exams or quiet environments, accommodations I receive, have both been proven to give no testing improvement to a non-disabled person.

    A disabled person is less valuable than an able-bodied one. This comes up a lot in discussions about abortion; one would obviously not want a child with a disability. The implication being that the choice is made solely based on how normal the child will be. I will state that being female has, and in some countries still is, considered a disability. Is that also acceptable?

    I do not advocate anti-choice. Yet, I do take offense to people being put into categories as being not of equal value. What if we reverse it? A disabled woman wants to abort a normal fetus. Does this fetus have more rights to her body?

    People with X disability also always has Y disability. While there is cormordality between some disabilities, this does not mean that it is always true or even mostly true. A person who is blind is very rarely also deaf. Someone who is deaf is not mute by default. Someone with attention deficit is not necessarily also developmentally challenged. A speech impairment does not prove a language deficiency.

    A disabled person is required to disclose his or her disability and prove it. This is equivalent to me asking someone about their last bowel movement; it’s none of my damn business.

    A person is defined by their disability. This is a very limited view; it would be equivalent to defining an able-bodied person solely on their English capabilities. It’s narrow and assumes a disabled person only ever thinks about their disability.

    Everyone is a little disabled. No. Everyone may be a little inconvenienced, but they are not disabled. Disability is defined by it making normal daily activities more difficult. An able-bodied person may be tired at the end of a 10 hour shift. A disabled person may be tired at the start of it.

    My sister/friend/partner/person I know has a X disability! I know how it feels! No, a person can only know what it feels like to be themselves. That said, this is a very depowering statement; it trivializes the experience of the referred person and the person one is currently addressing. It reduces time living with a disability to a series of observations, and don’t think for one moment that it’s all the worst or best parts. Even in the case of “I have X disability, too,” that does not mean the experiences are the same.

    Having/overcoming a disability is so strong/enlightened/inspiring. Putting someone on a pedestal is just as objectifying as treating them like garbage.  It used to be “he’s done so well , for a colored person” that was said. Doesn’t sound so okay anymore, does it?

    Special Treatment

    2009 - 11.10

    Professors are always biased when it comes to students they know. Depending on the professor, this may be a bias in your favor or one that makes you work 10 times harder than everyone else. Both aren’t okay.

    Today, I missed class because there was more grading for me to do. This extra work was because the prof I am TAing for accepted homework assignments via email from a handful of students and didn’t bother to tell me. 2 of these students emailed after the due date.

    None of these students has a learning disability, let alone one that affects their ability to turn work in. And, even if they did, university policy states that disability status cannot force a professor to have a flexible due date for students with disabilities.

    I’m pissed for several reasons:

    1. The students know damn well they need to use the checkin program and how to use it. Department machines can be accessed remotely.
    2. Turning in work late isn’t okay. Unless there’s a medical emergency, then tough shit.
    3. These students were out of town the weekend that the assignment was due. They had 1 and a half weeks to do and turn in an assignment that should take at most 2-3 hours at their level.
    4. I wasn’t informed until today about these students, 10 days later. I’m expected to finish grading within 5 days of the due date. (I ended up missing a class to do this new grading.)
    5. The professor didn’t consider the graduate TAs saying “no” to the students requests. This is rather disrespectful.

    Special treatment is very different from accommodation. I have never turned in an assignment late or partially completed; no one has ever told me that these are acceptable things to do. No one has said that misinterpreting directions, or choosing to view them as “not including me,” as being an acceptable thing to do.

    I have begun the process to file a complaint about this. And it’s not just about me. It’s about the graduate TAs that are expected to tell me what the professor is doing. And it’s about the 65 other students that did follow directions.

    Damn, I wish my job wasn’t so stressful.