Naturalistic Neurodiversity

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Posts Tagged ‘Dementia

Ableism in Atheism Anonymous #64

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Do you consider yourself to be a person with a disability?

Neurological; both physical and mental. Multiple sclerosis caused many disabilities of various sorts.  I have mobility problems, symptoms of movement disorders, occasional proprioception problems and uncommonly have trouble speaking, which may include slurring, dysprosody (rhythm and tone are off), and even expressive aphasia. Cognitively, I have a poor memory when unprompted, sensation can overwhelm me, I have great difficulty making decisions… and much more. I have frontotemporal dementia (but not Pick’s) that’s usual but not always mild. Among other things, it imparts some autistic-like symptoms. In a separate category, MS also gave me both heat intolerance and poor thermoregulation. When I get hot, I do very poorly and I’m more likely to get heat-related illnesses and to do worse if I have them.

Have you (or do you personally know someone who has) felt out-of-place or limited your involvement with an atheist community because of disability-related situations?

(Note: I’ve yet to be involved in person. The closest group is more than an hour away.)
I feel excluded online whenever I see a person use cognitive problems as insults or as a reason to discredit someone’s words. “Retard” or “-tard”, brain damaged or demented — those especially bother me.

I have also felt excluded by places that commonly demand citations. I have an unusual portion of source amnesia and do not always have the mental resources to search out a cite. While I understand that would make the claims suspect, that doesn’t mean they’re worthless. I hate being treated as if that’s so and I hate being told I’m rude or lazy because I may try to put out enough information for the reader to find the cite if I can’t. There’s a difference between lazy and incapable.

I feel excluded when there are implications, even jokes, that disability means old age. “Aging=disability” is common, invalid, and has real consequences, even ones that have hurt me. When I first asked for a wheelchair rental, the neurologist initially refused, saying, “You’re too young for a wheelchair!” My age didn’t mean my legs could hold me up and after much insisting, I got a wheelchair. Yes, my doctor would have me limited to bed and wherever I could crawl rather than prescribe a mobility device to help me only because I was “too young”. Aging=disability is not a joke, it’s a misconception that makes problems for all ages.

I feel excluded whenever there are talks about dementia, about losing mental faculties — often enough, disability in general. “Dementia is worse than death,” I’ve heard. “Dead, but breathing.” I’m part of an online atheist community where people have said they’d kill themselves if they… found themselves losing their mental faculties, were going blind, had to use a wheelchair regularly. In multiple communities, I’ve seen people say life isn’t worth living if… disability — disabilities I have. (To be fair, I’ve heard this outside of atheist communities, too.) This tells me their base position is that people like me (which includes me, though they claim otherwise), shouldn’t be alive. Outside of personal confrontation, it’d be hard to make me feel less included than that.

What steps could atheist communities take to become more inclusive?

I’ve yet to attend in-person events, but I have some standards I’d hope they meet:
Large events (conferences, concerts, etc) should be in ADA-compliant facilities. Preferably, they should have the accessibility (building, interpretation for the deaf, any possible Braille as perhaps for programs, etc) to be checked out and approved (if not set up) by someone who needs the accommodation. Nothing about us without us; it’s best to ask someone with a disability what they need rather than presume.
Local meetings… if they don’t meet at accessible locations, I hope they’d be willing to upon request. If there has been such a request, they should meet at accessible locations as many of the meetings as they can manage. Again, get the person’s input. Make it known that the group wants to accommodate everyone as much as they can and sincerely want to know if people need meet-ups to be different than how they are currently. Of course, consider the input and modify as necessary. Avoid “we can’t” in favor of “I’m not sure how, but let’s look into how we could do this.”

Online, avoid talk of disability-as-insult, as disability as a reason to dismiss someone. Condemn such talk when someone does it just as the community does (or should do) with misogyny and homophobia. A comment policy that condemns that wouldn’t be a bad idea, however misogyny and homophobia would be treated.

Give people with disabilities space to be the best they can be and accept them as they are. Give people with cognitive problems the benefit of the doubt, at least if it’s evident they’re trying. Skepticism requires significant effort and some say “really being” or “proving” you’re an atheist or humanist requires much (reading N-many off a list of books, for example). While I don’t think much of having strict standards for determining who’s “really” in a group, groups that do should leave leeway for those who genuinely don’t have the ability. (If taken strictly, though there are humanists in this state that can officiate marriages, I would be unable to meet their standards because I can’t read the books and can’t manage finances myself, for example.) We should not refuse anyone on account of disability, whatever the disability is.

I’d prefer there be no talk of “Life [under X disabled condition] isn’t worth living”, but if that cannot be eliminated, I want community leaders (because little-ol’-me was ignored) to engage with the idea of when-if at any time-life isn’t worth living, when death is (dementia=death?), etc, making sure to mention counter-examples. When there’s a person in a wheelchair in the community (and online “community” can be most everyone) and someone says that if they had to be in a wheelchair, they’d kill themselves, it should be treated as if a white man announced that if he woke in the morning to find his skin turned brown, he’d kill himself. It should be recognized the person is saying the person with the disability (or with more melatonin) has a life that isn’t worth living, isn’t even worth trying to live. Whenever there is such talk, there should be (at least reference to) a serious discussion about it. The “solution” shouldn’t be to tell the person with the disability (or darker skin), “Oh, no, I wasn’t talking about _you_. You’re fine, I like _you_.” That’s very “I’m not ______-ist, I have a ____ friend.”

Any other thoughts about ableism and atheism?

I think disability, atheist, and skepticism can go well together and think atheists could do good in fighting for disability rights. Atheists don’t think disability is punishment (there’s no one do the punishing, in any case). With no gods to blame or to rely on, all we have are each other.

I wish people in the atheist community (and outside of it, true) would recognize their ableism and then get over it. I know it can be scary to think about disability. Such change is almost always unwanted, but a disability can be acquired in a split-second. People need to understand that (more) disability doesn’t mean they’re a different person or that life isn’t worth living, worth trying to adjust — it’s just different. Also, we need to understand that we can’t really know what goes on between another’s ears, so we shouldn’t presume. If we do presume and presume incorrectly, we should recognize that’s our issue rather than the other person’s. I know online there are a lot of trolls, but presuming a bit of good faith can be helpful.

I know the community could be a force for good. To me, it seems quite natural that humanism should promote people being of equal worth and having equal rights regardless of disability. Surely humanists should naturally promote universal access. Surely they should defend or protest when people with disabilities are ruled against in court. Surely they should be part of the force trying to get resources for disabled victims of domestic violence. Surely they should speak up in protest whenever a family “care-giver” kills their charge, their “loved one”, and the glurge reporters all talk about the poor, loving care-giver and how sad it was they had to deal with such a burden, etc, rather than that the killer is horrible for murdering someone they said they loved. Most ground-floor residences still aren’t built wheelchair accessible. Women with disabilities are victims of assault, rape, and murder much more often than their non-disabled peers. (Men, too, but I’m not sure about rape.) A few years ago, a newborn was taken from two Colorado parents without any investigation into their ability to care of the child; they were presumed unfit just because they were blind. I know no group can take on every cause, but these things are is going on now.

Unfortunately… I’ve yet to find an atheist group that recognizes their ableism. I’ve been told ableist comments were “just joking”, told to get a sense of humor, told to get over it, told to leave for a while and not bring it up again. I’ve been brushed off with “I didn’t mean it that way” with no investigation into what they really meant, what other ways they could’ve said, and why they used the words they did. I’ve been told disability is awful and death is better… but they like me and aren’t talking about me. Death is better than disability yet I am very much disabled and if I’m ever bothered by suicidal thoughts, the same people try to talk me out of it. They don’t see the discrepancies and are unwilling to investigate. Where is skepticism there?

Atheists need to recognize their ableism as a serious issue, one to be discussed, understood, resolved, and inclusion something to work toward. These talks… they need to include people with various disabilities. I think many atheists feel like they are inclusive of everybody when they’re not. I know Crommunist talks about racism in ways that people who think they aren’t racist realize they really are. Ableism is harder–first because many people haven’t heard of the word, second because ableism is so deep in the culture as to be invisible. The denial and defensive response needs to end; understanding and working on it needs to begin. I suppose it could turn into series of fights like misogyny is, but I hope against that. I think there’s yet to be much recognition of this discrimination.

Disability rights is a human rights issue that has the possibility of affecting literally everyone. (I think such activism could be good publicity, too; what self-proclaimed “moral” group would disagree with helping people with disabilities?) I think it’s worth fighting for, and, to think smaller, I think every person is deserving of respect. But to do any of this, atheists need to recognize ableism as real, as ubiquitous, and as a problem that needs resolving.

Response #64 from the Ableism in Atheism survey.

Note: I am grateful to each and every response, but I want to make a special thank you to this person for hir heartfelt response.


Ableism in Atheism Anonymous #56

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Do you consider yourself to be a person with a disability?

Not really noticeable

Slightly depressed, slightly bipolar (forgot the actual diagnosis)

Have you (or do you personally know someone who has) felt out-of-place or limited your involvement with an atheist community because of disability-related situations?

Never been to one

What steps could atheist communities take to become more inclusive?

I’d say take a particular situation which really highlights the discrimination, and get it around in the big blogs. Something like Elevatorgate

Any other thoughts about ableism and atheism?

I’ve referred to myself as insane, crazy, discombobulated, etc. I don’t tend to mind it when people say it too much, but I get by without medicine, and my condition isn’t all-pervasive, nor is it readily identifiable (people mostly think I’m a bit grumpy). So I haven’t been hurt when somebody calls me “crazy” or some variant.

I still think there needs to be expressions available that clearly indicate religiosity as a mental condition, and those who practice it are in need of help. At the same time, I have no pity for those who make fun of “retards” or “cripples.” I’ve proven myself willing to take a few punches, an give a few out, to assholes who want to belittle those that can’t fight back. My uncle is retarded (not sure of the actual condition), I have an aunt with Down’s Syndrome. My grandfather died of Alzheimer’s. On the other side, I had an uncle with early onset dementia, and my grandmother went senile later in life. So I’m no real stranger to mental illness.

In short, I’m not the best person to ask. I have a thick skin, and tend to have selective hearing in those areas that don’t affect me directly. Something I’ve tried to work on, though not getting into fights over it anymore.

Response #56 from the Ableism in Atheism survey.

Written by The Nerd

June 8, 2012 at 12:00 pm