RCAD 17, 18: Discrimination, Stigma, Preferential Treatment

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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RCAD: General Experience with Disability

1.  What is your experience with disability? — Do you have disabilities? Do you have loved ones who live with disabilities? Do you work with people who have disabilities? 5)What are some significant moments/events in your life that connect to disability? — For example, you can talk about hearing a diagnosis for the first time, meeting a role model, learning something important that helped form your understanding of disability, etc.

I discussed my various disabilities in the previous post, in this one I’ll focus on my broader disability awareness. When I was first told about Asperger’s Syndrome, I rejected the label- it sounded too negative. Even so, as a kid, I went to Camp Courageous of Iowa, with kids will all different types of disabilities. Even though, at the time I didn’t really identify as disabled and thought that the doctors were “lying”, I came to better understand and empathize with people with disabilities from that experience. After we moved to Minnesota, I and my brother both attended Camp Discovery or Camp Hand-in-Hand, both run by the Autism Society. Being around other kids with Asperger’s, I felt “normal” for once, and came to see it as a set of differences that are a disability in broader society. I reclaimed it as part of who I was, and made it my own, rather than a file that belonged to doctors and my parents.  These camps are held at sites owned by Courage Center in Golden Valley, and there are sessions for many types of disabilities, for both children and adults. Since there were several sessions for Deaf people, many of the staff are Deaf, and each cabin had a Deaf counselor. We learned some sign language as one of the camp activities, as well as informally, and I know one camper who took classes in ASL at St Paul College and was planning on getting certified to be an interpreter. I’m not sure if she has finished with this training. Anyway, I think the interaction between autistic and Deaf people is particularly interesting, since autistic people tend to have trouble reading and using body language, learning sign is a great way for us to learn body language and emotional expressions more systematically and explicitly, and it has potential as a form of communication for non-verbal autistics. Having adult autistics working at the camp- each cabin had one called a Mentor was also amazing, and I become a Mentor myself and worked as one for 7 sessions over the years.

I attended Augsburg College, which has great programs for students with both physical and learning disabilities. I will talk more about accommodations in a later post.  But anyway, in some respects college was like a grown-up version of going to the Courage camps- I had many friends with various types of disabilities, particularly in Queer & Straight in Unity and we helped each other when needed, and you didn’t feel like you constantly needed to explain yourself and your needs- a little here and there yes, but for the most part these differences were pretty well understood and accepted. All the roommates I had throughout college had Asperger’s or other learning disabilities, and one roommate used a wheelchair. Having him as a roommate definitely raised my awareness of accessibility issues, we’d go around, plan various social activities and realize “Oh, crap, Levi won’t be able to get in to that place!”

Questions from 30 Days of Mental Illness Awareness-

6: Do you have a family history of mental illness or mental health issues? (Caelesti’s note: I’m including anything that falls in the DSM-V, such as developmental & learning disabilities)

Ah, yeah you could say that! Especially on my mother’s side- I call the range of symptoms they have “the O’Leary spectrum”. My dad has Attention Deficit Disorder & depression (including Seasonal Affective Disorder) , and my mother has Obsessive Compulsive Disorder (OCD) and a mix of anxiety and depression (I’m not sure of specific labels) My brother is on the autism spectrum, also has ADD and depression. Several of my mother’s siblings and some of their children have various mixes of depression, anxiety, obsessive compulsive symptoms, AD/HD, and one person is bipolar & dyslexic. My mother’s fraternal twin sister is very calm and clear-headed in an odd contrast to the rest of her siblings!

RCAD 2, 3: Collecting Labels Like Pokemon

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.

Redefine Disability Awareness Challenge/30 Days of Mental Illness Awareness

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Image description: Redefining Disability: A Discussion of Pop Culture, Media and Changing Perceptions. Below: Join in at rosebfischer.com  Mottled rainbow background

A fellow blogger, Rose Fischer came up with this comprehensive list of questions about experiences with disability (they can apply to oneself or experiences with friends & loved ones) , inspired by Marcy’s 30 Days of Mental Illness Awareness Challenge which I have also listed below. I might combine the two sets to some degree but will link back for each individual question. I also might use it for ideas to make my own list- there’s stuff I want to talk about and stuff I’m less interested in, but I have trouble articulating what that is and I might have a better time getting responses and viewpoints from other people if I participate in something like this. Plus Rose is a really cool person, and I want to support her projects as I am able. Some of the questions I’ve already answered to some degree in older posts, so there might be a little repetition. If you want to participate yourself, please link back to her page here and use the banner if possible (She also makes lovely graphic designs!)

1. What is your experience with disability? — Do you have disabilities? Do you have loved ones who live with disabilities? Do you work with people who have disabilities?
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? — I’m trying to be as broad as I can with this set of questions. I know that people have different ideas of what “disability” means and I want to give room for that discussion. Presumably, if you are taking part in this challenge, you either have a medical diagnosis that is typically regarded as a “disability” or you know someone who does.
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?
4. Do you think that it’s more important to emphasize medical treatment, life skills, community integration, or a combination of these things?
5. What are some significant moments/events in your life that connect to disability? — For example, you can talk about hearing a diagnosis for the first time, meeting a role model, learning something important that helped form your understanding of disability, etc. (Partial answer here)
6. Are your activities of daily living affected by disability? If you’re comfortable, share a little of your daily routine.
7. Is your work or school life affected by disability?  Describe some of these challenges.
8. Is your family life affected by disability? In what ways?
9. Are your leisure activities or hobbies affected by disability? How do you work around this?
10. Does disability affect you in other ways? If so, how?
11. Free post day! — Write about anything on your mind today. Any topic that the series doesn’t cover, anything going on in your life related to disability, something you’re excited for, something you’re frustrated about.
12. Describe a good day in relation to the ways your life is affected by disability.
13. Describe a bad day.
14. Describe your baseline, or an average day.
15. What are the biggest challenges that you face in regard to disability?
16. What do you think are the biggest challenges that your family members face in regard to disability?
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.
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.
19. In what other ways are your interpersonal relationships affected by disabilities? — Examples might be that it’s harder for you to form or maintain relationships or that people treat you differently once they realize you have a disability.
20. Do you have preferred language when it comes to disability? — There is a lot of debate about appropriate language and definitions of disability. Since there’s no widespread agreement, I want to hear as many views as possible.
21. Free post day! — Write about anything on your mind today. Any topic that the series doesn’t cover, anything going on in your life related to disability, something you’re excited for, something you’re frustrated about.
22. What would you tell someone who has recently been diagnosed with your disabilities or disabilities that you are familiar with?
23. What would you like the general public to know about your disabilities, disability in general, or any other relevant subject?
24. If you could “cure” the disabilities that affect your life, would you? Why or why not?
25. What things are most important to you when it comes to media representation for people with disabilities or your disability in particular?
26. What barriers do you encounter in your daily life when it comes to disability?
27. What is your opinion about forced treatment, and who should decide when a person is or is not capable of making sound decisions about treatment?
28. Do you or someone you know use adaptive equipment/adaptive technology and how does that affect your life?
29. Are there ways that disability affects your self perception? — Ideas for this might be self-esteem, confidence, body image, future plans, etc.
30. Do you see disability as more of an asset or a drawback in your daily life?
31. Free post day! — Write about anything on your mind today. Any topic that the series doesn’t cover, anything going on in your life related to disability, something you’re excited for, something you’re frustrated about.
32. At what age were you or your loved ones diagnosed?
33. How has your life changed as a result of that diagnosis?
34. How has public perception of disability changed in your lifetime?
35. How has your perception of disability changed in your lifetime?
36. How has medical treatment and technology changed in your life time?
37. Have recent advancements in medicine or technology had any affect on the way you manage your disability?
38. How would you like to see the medical community change in the future?
39. What technological advancements are you hoping to see in the future?
40. Are you involved in any political or social activities related to having a disability? This could be anything from an advocacy group to an informal social gathering to participation in adaptive sports.
41. Free post day! — Write about anything on your mind today. Any topic that the series doesn’t cover, anything going on in your life related to disability, something you’re excited for, something you’re frustrated about.
42. Why do you think media representation for people with disabilities is important?
43. What is your country of origin and are there laws protecting the civil and human rights of people with disabilities there? In what ways are those laws enforced or ignored? (Some discussion here)
44. What would you change about the way your country or region reacts to disability at a political level?
45. In what ways does the educational system in your country accommodate students with disabilities or your disability in particular? How can such accommodations be improved?
46. If you could change one thing about the way that disability is perceived in your culture, what would it be?
47. Are you involved in any groups or subcultures where perception of your disability is relevant? — Examples might be religious groups, sports teams, a racial or ethnic group that perceives or reacts to disability differently from the “main” culture you belong to.
48. What is the worst experience you’ve ever had related to disability?
49. What is the best experience you’ve ever had related to disability?
50. What other questions or topics that this challenge include? The last two prompts will be free post days, so feel free to include answers to some of them.
51. Free post day! — Write about anything on your mind today. Any topic that the series doesn’t cover, anything going on in your life related to disability, something you’re excited for, something you’re frustrated about.
52. Free post day! — Write about anything on your mind today. Any topic that the series doesn’t cover, anything going on in your life related to disability, something you’re excited for, something you’re frustrated about.

30 Days of Mental Illness Awareness Challenge

1 What are your mental illness(es) Explain a little

2 How do you feel about your diagnosis?

3 What treatment or coping skills are most effective for you?

4  What are the pros and cons of having a mental illness(es) or your specific illness(es)?

5 Do you believe nature (biology/physiology), nurture(environment), a mix, or something else has an impact on mental health?

6: Do you have a family history of mental illness or mental health issues?

7 Do you think there are any triggers or patterns to how your illness(es) effects you?

8:  What age you were diagnosed at?  At what age do you think your symptoms began? (You can make a timeline)

9 What are some of the important events in your life, that may have effected your mental illness(es) for the worse or better? (You can make a timeline)

10 What is the best thing in regards to your mental illness(es)?

11 What is the worst thing in regard to your mental illness(es)?

12: What do you think about your diagnosis in general?  (Some ideas are: stereotypes, commonalities, misdiagnosis, over diagnosis)

13: If you know the criteria of your illness(es) which ones do you think you meet? Or what are your most common symptoms?

14: Have you ever experienced stigma?

15: How has your life been effected by your illness(es)? (Some ideas are: relationships, career, school)

16- How many people are you “out” to with your mental illness(es)? Why?

17: If you could get rid of your mental illness(es) would you?  Why or why not?

18:  What do you wish people would understand in regards to mental illness and/or mental health?

19: Have you ever read a self-help book or a book related to psychology?  What is your opinion on them?  If you have read them do you have a favorite?

20: Where do you get your support?

21: Many people say stress triggers symptoms, do you agree or disagree?

22: What is your opinion on medication used to treat mental illness(es)?

23 What is your opinion on therapy? (It can be any type, some examples are: group therapy, talk therapy, social skills training, exposure therapy, ERP,DBT, CBT, ACT,  marital counseling, and many more)

24 What is your opinion on alternative treatments or treatments that aren’t commonly used? (Some examples are: EMDR, hypnotherapy, herbal or vitamin supplements, acupuncture, massage therapy, art, music, or recreational therapy, ECT, VNS, TMS, DBS)

25 What is your opinion on forced/coercion in mental health treatment? Can be legal (law enforcement or psychiatric holds) or a “helping” friend/family member.

26: How is your day-to-day life effected by your mental illness(es)?

27  Explain a “good” day.

28 Explain a “bad” day.

29 What are a few of your goals regarding your mental health.

30 What does recovery mean to you?