Posts tagged ‘epilepsy’

RCAD 17, 18: Discrimination, Stigma, Preferential Treatment

redefining-disability2

Redefine Disability Awareness Challenge by Rose Fischer

My non-linear brain prefers to answer these in a random “what appeals to me today” order, some repetition may ensue.

17) Have you experienced discrimination because of disabilities? Discrimination comes in many forms, from refusal to employ or accommodate a person with a disability to treating that person with disrespect because of it

Possibly, but it’s hard to tell for sure (let alone legally prove!) since my disabilities are hidden/invisible. I do tend to strategically reveal them to employers *after* they have hired me, (often after scoping things out, and possibly allying with a co-worker who has a learning disability, or a kid with one) but before some social, emotional or sensory issues pop up that might endanger my job if I don’t develop a strategy to cope with them. I often figure out these strategies and coping mechanisms on my own, without consulting with anyone, but my ability to do so may depend on the structure and expectations of the job, and how flexible and open-minded the supervisor and co-workers are willing to be.  I’ve felt rather annoyed with the conventional disability services complex because the professional helpers seem to have this naive faith that the ADA- Americans with Disabilities Act will always magically protect you from discrimination, and you should just go ahead and reveal your disabilities.  I think this is due to shortcomings and assumptions from how they are trained, and professionals who actually are familiar with Asperger’s and ADHD are far more helpful. With more generic disability professionals, I end up spending as much- or more time educating them about my disabilities than actually getting relevant help and suggestions from them.

18) Have you experienced preferential treatment because of disabilities? —By preferential treatment, I mean situations where you were treated better or differently from your peers even though there was no valid reason.

I’ve gotten the condescending kindergarten teacher voice from people- and being treated as if I were “slow” after people found out about my label(s) or picked up that I was a little “different” or “special”. I wouldn’t consider any of that preferential! Honestly, if there were more companies that practiced active recruiting of people with disabilities- and didn’t limit that definition to only certain conditions (as the federal government does) I think that would be fantastic. I know that doesn’t fit with the mainstream disability rights movement’s “we want to blend in and be treated like everyone else” agenda and raises the oh-so-scary specter of affirmative action that makes middle class white people run away screaming, but I don’t really care. Their strategies haven’t been working very well, its time we tried something else.

30 Days of Mental Illness Challenge by Marcy

14: Have you ever experienced stigma? 

Yes- mostly from people making cluelessly insensitive comments in front of me about autism and mental illness, often while not realizing I have either such experience. Sometimes I challenge them while staying “in the closet”, sometimes I come out if it feels safe and appropriate to do so. Often it’s a “Eeeww, I don’t want to be associated with Those Crazy People!”. Maybe this relates more to the pseudo-preferential treatment discussed above, but I’ve especially noticed this stigma when mentioning my past seizures/epilepsy. Sometimes with mere mortals, sometimes with doctors and other Experts ™  who should “know better”. I’ve gotten “back away slowly before she explodes!” style reactions, being treated like I’m a porcelain doll, need to be told what I’m capable of doing and how to take care of myself and “Oh, you poor dear, there but for the grace of God/the Universe go I” and other crap. This is very similar to a lot of the complaints I’ve heard my friends with more visually apparent physical disabilities talk about how they’ve been treated, and I’ve also witnessed some of that nonsense myself while around folks with physical disabilities.

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June 25, 2015 at 11:21 pm 2 comments

RCAD 2, 3: Collecting Labels Like Pokemon

redefining-disability2

Redefining Disability 

Question 2: If you have a medical diagnosis, do you see yourself as having a disability? Why or why not? If you don’t have one, how do you view the concept of disability or the people in your life who have them?

Depends on which one- I see the epilepsy as an impairment, as in its inherently disabling by its nature rather than due to social/political structures.

The most inherently disabling thing is probably the anxiety and depression, when I have those under control, and find the best ways of adapting things to suit my brain (autism/Asperger’s, ADHD, dyscalculia, possible giftedness) then they are more like differences and uneven social/emotional abilities, development and intelligences and a unique and intense way of experiencing the world. Whether I identify as a person with disabilities kind of depends on the social context.

3) What have your experiences been with medical treatment and/or therapy been like? Do you have positive, negative, or mixed feelings about your experiences?

I mostly talk about being autistic/Asperger’s Syndrome but the truth is I have a whole collection of medical/psychiatric labels. I collect them the way some people collect Pokemon cards! Except, they tend to be more expensive, and you don’t keep them in album and show them off to people! They are more like credit cards that I only reveal when I need a specific service, accommodation or treatment, that only my special cards will get me.

As a child it was noticed that I had emotional problems, and when my mother took me a doctor he said I had “fragile moods”. Not especially helpful! In the 1980’s autism was not very well-known, especially for children that were verbal and intelligent. Later on, after we moved to another state my brother and I were both given a bunch of tests and labeled with autism- “high functioning autism” in his case, Asperger’s Syndrome in mine. At the time these were both considered rare conditions. Throughout my life, I’ve experienced problems with depression and anxiety, which are somewhat related to autism and other learning disabilities- I am more easily stressed out by changes in my environment, schedules, sensory input, and interactions with people. Being worried about doing the right thing socially and figuring out how I will make it in the world leads me to have anxiety problems.  I can’t remember when I was diagnosed with major depression and generalized anxiety disorder, since I wasn’t really “in charge” of my care until I was an adult.

To be frank, especially when dealing with psychiatrists I’ve often felt very dehumanized. The problem of course is that if you describe such feelings to a mental health “expert” they will often dismiss it and attribute it to your depression or other issues. Yes, you can have depression to begin with, but persistently being viewed as a walking case file and list of symptoms is also pretty depressing!

One psychiatrist I had seemed to not understand the difference between Asperger’s and Obsessive Compulsive Disorder- they have overlapping symptoms, and some people have both, but they are still different things. So he kept medicating me for OCD all thru high school and thru part of college until I did some research and realized that the medication might actually be making my anxiety worse, so I tapered off of it.

Another psychiatrist I saw thought the mix of both depressive symptoms and hyperactivity meant I had Bipolar Type II (a “milder” form of Bipolar Disorder in which a person has shorter periods of depression and hypomania, rather than full-blown mania. I researched that, and found the description didn’t fit what I was experiencing.

I suspected instead that I had ADHD, and I saw a therapist who evaluated me for it, and it turns out I was right! They had only used one type of test for AD/HD when I was a kid, a Tova test and I barely “passed it” (or is it “flunking”?) but my father and brother were both diagnosed with ADD. It’s interesting, because most people I know my age were diagnosed with ADD or ADHD as kids, but didn’t get the autism/Asperger’s label until their teens or adulthood, because it was less well-known. I guess I just confuse the “experts”, now don’t I?

I have also struggled with math, telling time, a sense of rhythm and other issues which all fall under the term dyscalculia, a learning disability that no one has heard of, though it’s about as common as it’s more well-known cousin, dyslexia. It seems people consider being “bad at math” less noticeable than having trouble with reading, even though they both very important skills. I actually flunked PreAlgebra…in college- though I did fine after I had a tutor!

I also have epilepsy- grand mal seizures, which commonly overlaps with both autism and depression and other types of mental illness. Fortunately that is now under control with medication.

I like the therapist I have currently- she respects me as an individual with my own opinions/interests etc. without trying to box me in based on any labels I have, but she also recognizes my challenges and helps me learn to deal with them. I also see a psychiatric nurse rather than a psychiatrist, and while this may not work for everyone, I recommend this option if you’ve had trouble with psychiatrists. Nurses are trained to have a better rapport with people.

June 19, 2015 at 1:55 am 2 comments

Are we that Clueless about Disability?

So is it true that Pagan communities are less disability-friendly than other religious communities? I think that’s a really hard question to answer, especially considering how you can debate what “pagan” or “disability” even means.  An Asatruar might insist they are not Pagan, a Deaf person may insist they are not disabled, regardless of how others may view them.

Progressive/liberal movements also often don’t “get” disability, which likewise influences progressive-oriented Pagan and alternative spiritual groups. It’s a very mixed bag in everything from feminism, racial and economic justice groups, GLBT groups etc.  One thing I can say across the board, whether dealing with Pagan groups or lefty activist groups, is it depends on the individuals in the group, and what they are aware of and advocating for.  The disabilities that they have, or  have encountered in their personal lives are key. Then disability groups themselves vary widely in what other “isms” and minority concerns they include, and what disability issues they “get” or don’t. The disability rights and Deaf movements in the U.S. started on college campuses, among relatively privileged activists, the movements still reflect those origins, along with mostly white middle/upper-class parents, family members and professionals.

That said, I’ll share some of my own experiences and observations- both good and bad about attitudes toward disability I’ve encountered among Pagans.  A big positive for myself as an autistic person, is that Pagan communities tend to very accepting of eccentric behavior. There may be debates about exactly what kinds, or how far such behavior, dress and appearance should go, but in general, having quirky mannerisms is more tolerated. I pretty much bring up autism as it comes up and seems relevant, but otherwise I seem to get along pretty well with Pagans without mentioning a label. When it does come up, I find people are usually pretty accepting- often people will feel as if they understand me better, and they often mention autistic traits they notice in others, (or themselves) or family members/friends who have been diagnosed.

Often when trying to get disability services I have more trouble getting people to understand autism as a disability, especially since I am fully verbal, live independently etc. But on the other hand, I seem to have an easier time with social acceptance- I think because people don’t usually immediately put me into a “disability box” based on use of a wheelchair or other such visible signals. That gives me the freedom to explain it when it feels comfortable, appropriate and relevant.  In sociological terms, I am able to manage the “stigma” surrounding my disabled identity, whereas others with more overt disabilities get hit with more of the brutal impact of disability prejudice- the kind of crap I’ve managed to mostly avoid since high school. I have noticed, interestingly that people do seem to have a stronger, more uncomfortable reaction when I mention the epilepsy than the autism. Hence why I don’t mention it much.

No, most of the cluelessness about disability hasn’t been directed towards me, it’s been to other people.  Frankly there are plenty of times when I haven’t thought about accessibility until I encountered it through the eyes of a friend.

Once I invited a friend to Imbolc ritual.  The leader of the group was encouraging us to invite friends and family so they could get the chance to learn about our religion. My friend did enjoy the event, but it was on the third floor of a decrepit building and she had bad knees, so it was difficult for her to climb all the stairs. Later I brought this up to my teacher, and asked what we would do if a wheelchair user wanted to attend an event. His reply: “Oh I’m sure his or her fellow students would be happy to carry him up the stairs”.  Right, because that would be so dignified. Not to mention the assumption of ability to carry the person, and the safety issues involved. Later on, after I left this group (for many reasons) the teacher bought a house, and again placed the temple on the second floor of the house. Another group I was involved with met at a metaphysical bookstore on the second floor. Someone e-mailed us that they were interested in coming, and mentioned that they used a wheelchair. I explained to them the situation, but told them I would try to move the discussion to an accessible location.  But the other two people would hear none of it. Seriously. In retrospect, I should’ve e-mailed the person and said that I would be happy to meet with them somewhere accessible. If that situation arises again, that’s what I’ll do.

I am going to give props though, to the folks involved in Pagan Pride and Paganicon. They have been really awesome about trying make sure those events are accessible to people of varying abilities and to the public transit system and for that I am thankful. There are some kinds of accessibility that harder to deal with in rural settings and since many groups meet in homes those also tend to be less accessible. I think in general, though as we move toward larger more public events we will have more options for accessibility.

February 8, 2014 at 12:09 am 5 comments

We Are More Than Our “Special” Skills

Follow-up to “Anyone Noticed…” and “Autism” on two other blogs. In the first, Amanda Baggs. an autistic blogger who I’ve long enjoyed reading, notes that if you are autistic you can’t just be religious or non-religious without someone claiming that the reason(s) you are are due to your disability. Autistic or disabled people are inherently seen is being more or less inherently spiritual than others.  Leigh Archer, a pagan on the spectrum chimes in with her own experiences.  She notes that as a Loki-worshipper she often gets people dismissing her path, or attributing it there being something “wrong” with her.

“Disability and religion isn’t something that’s talked about much in pagan communities, and that really needs to change. Ableism is, to be honest, rather rampant in pagan communities, both online and off. Much of it is covert or “casual” ableism; things you might not notice if you’re not disabled and haven’t had to deal with it yourself. ” Very true, most ableism I’ve seen among pagans has been directed towards others- typically physically disabled folks. Yet when I’ve confronted it, I’ve generally gotten a bunch of paltry excuses.  Many from people who don’t know that I’m disabled in some way.

I’ve found some odd paradoxes about being autistic and belonging to various other “non-mainstream” groups- in some ways it seems that because I’m autistic I can “get away with” having interests (including religion) and behavior that are unusual.  “Oh, it’s just her cute little mythology special interest”My dad kept patting me on the head thru high school with that line’ til it finally sunk in to him that this was an Actual Religion.  Fortunately I haven’t had too much in the way of dramatic ecstatic spiritual experiences as a teen, or my lack of internal filter would probably have resulted in mental health practitioners getting trigger happy with prescriptions for anti-psychotics. My seizures only result in symptoms similar to hangovers, no cosmic trippy dreams. Hate to disappoint anyone.

There are several problems in this discourse that I’d like to highlight- the black/white thinking- you either must be atheist because you’re autistic, or have a less of a sense of love/empathy/a soul- or you must be a Child of God/angel/otherkin/psychic/Indigo etc. The Magical Retard instead of the magical Negro (case in point would be Forrest Gump) The dehumanizing of people with disabilities- generally related to “real humans do/have trait x, you don’t, therefore you’re not really human/Pagan etc. (The No True Scotsman logical fallacy)  Or you’re delusional. Moses, Muhammed, Jesus. All prophets are just nuts, right? Some people with disabilities or medical conditions will try to find spiritual ways of making meaning out of the circumstances of their lives. That’s fine. Let us do that. Don’t tell us what it means, or if it means anything. You can be compassionate and supportive without pulling in lines like “God has a plan”.  I don’t find that comforting, leaving aside which God you’re assuming I believe in, my response is “Well, all of his other plans have failed”.

The idea of having “special skills” I’ve had hammered into my head from a young age from Temple Grandin and a zillion other people who repeat everything she says- yes you’re disabled, but don’t make a big deal out of it- accentuate the positive and find your special skills, get really good at it, and then people will tolerate you if you’re a little odd, so long as you’re good at what you do.  Newsflash: Not all of us have a special savant skill. Or if we do, it’s not something someone will pay us to do on a basis which we can make a living.

And to my fellow folks with disabilities, let’s do what we can to challenge these attitudes- we get these messages from society and internalize and reinforce them. So let’s stop.

*my use of “retard” in this context is satirical, I’m making fun of the attitude behind that word, not people with  mental disabilities.

**Nothing against Temple Grandin, I’m just sick of everything she says being constantly repeated. Usually by people who claim they aren’t autistic ironically…

February 4, 2014 at 3:44 am 2 comments


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