“Stop…” A Poem: Disability Day of Mourning 2016

Note of explanation- March 1 is Disability Community Day of Mourning for all those infants, children and adults with disabilities killed by caregivers, parents, police- personally I’d also include anyone who committed suicide (with assistance or alone) because society told them too many times that their life was not worth living.

Today I share this poem, originally published in June 2013, to witness and remember the lives of Disabled people killed by their parents and caregivers…  Stop..   Stop   …

Source: “Stop…” A Poem: Disability Day of Mourning 2016

Alternatives to Autism Functioning Labels

Autism used to be divided into “High-functioning Autism” or Asperger’s Syndrome and “Low-Functioning Autism”. Commonly these are conflated with the ability to speak and various self-care skills. Though these have since been lumped together into one diagnosis- Autism Spectrum Disorder (ASD) in the DSM-V in the United States. But people still use HFA/LFA and Asperger’s and “mild” and severe informally as descriptors.

Autistic activists have been critical of this distinction long before the “merger” of autism labels. No matter how well-meaning, they are frequently used against us- too high or low functioning for this or that service, based on shallow observations and assumptions, this person’s life is easy, this person’s life is hard, this person’s experiences are a valid representation of autism, this person’s aren’t. It isn’t flattering to be told “you’re doing well for someone with autism “. I want to be doing well *for me* relative to my abilities, skills, effort and what makes me happy- which might not fit other people’s ideas of success, but look at our society- I suppose Donald Trump is considered “successful”. 

At the same time, I understand the need to communicate what sorts of skills and abilities an autistic person has. But in fact, moving away from functioning labels may actually be helpful in getting people to better understand autism and all the ways it can manifest.  To be honest, I don’t think there is actually a good way of “replacing” functioning labels with something more accurate and less ableist. It’s a lot more qualitative- someone’s ability to do a particular task well often depends on what else is going on- sensory input, interactions with other people, disruptions or lack thereof in expected schedules and plans. Heck, this is the case for most human beings, autistic people are just more easily affected by these things.

The best shorthand descriptor is I (or my child/student etc.) need X type of support, accommodation etc. What I find difficult is that many people only seem to understand- or even legally allow, or portion out needed funding for an accommodation if it is necessary *all the time*, when many of them are for me pretty situational. “That’s not an accommodation- that’s just a preference”. Sometimes getting my preference can mean the difference between a job well done and a job done at the bare minimum. It’s not always this petty thing, like being allowed to decorate my cubicle or not.

I can go to work and do Task X at Pace Y, but then you throw in an office party, and I may need a break between that and doing regularly expected Task X in order to do it competently. I may get permission to skip the office party, but skipping every office party may result in some unforseen social consequence, because Everyone Was Told X Thing at the Party, um hello, duh? Policy change, competition announcement, co-worker wondering why I didn’t congratulate him/her on the birth of their new child. Or just the general perception that I am not a “team player”. Explicit communication please!

Shamanism Part 3- Other Words, Other Worlds

I encounter with relative frequency, individuals calling themselves shamans or having an interest in shamanism in both online and offline settings. I suspect most of them are not Evenki or Tungus Siberian folks, though there is the occasional exception. I would humbly propose to other well-meaning defenders of indigenous cultures that screaming cultural appropriation! at these New Age “shamans” is probably not the best approach, especially if they are not actually the ones leading the weekend sweat lodge retreats and publishing books on Shamanic Wiccan Druidry. Instead, let’s have conversations.

Is there a better word to use than shaman?

What are you trying to describe with the word shaman or the adjective shamanic?

A role serving a particular community as a spiritual specialist who does lots of intense spirit work, healing and otherworld journeying?  What tradition do you work within? Are there more culturally specific terms?

A solitary path that involves intense spirit work and otherworld journeying? Spirit worker, mystic, hedge witch/wizard/warlock

A belief/worldview involving plant, animal and other spirits?  Animist

Some Potentially Very Bad Reasons for “Deciding” to be a Shaman include…

Connotations of “Noble Savages” who are more “in touch with nature, what it Truly Means to Be Human etc.” in contrast to This Corrupt Urban Industrialized Disenchanted society that I still don’t want to leave cuz indoor plumbing and electricity are nice… Please unpack your cultural assumption baggage again- some books that might help:

Playing Indian by Philip J. Deloria

Orientalism by Edward Said

Books, articles and classes on postcolonial theory, postcolonial feminism, anthropology, cultural area studies (American Indian, East Asian, African diaspora et al.)

You have what Western medicine classifies as a mental illness, chronic illness or other disability. Therefore, shaman *must be* your spiritual calling!  You have a shaman-sickness! You are specially/chosen or “marked” by the Gods/Spirits/Ancestors! Your suffering, isolation etc. now has meaning and It All Makes Sense Now!  OK, let’s slow down. I admit this one is a little close to home, as I myself qualify as neurologically divergent in various ways (autistic, epileptic, ADHD, etc.) I believe this *does* make my spiritual perceptions and experiences unique and different in various ways, but I’m hesitant to jump to the conclusion that This Means I Must Have a Special Cosmic Destiny!!!

For one, I know plenty of other people with the same conditions as well as other disabilities that do not have any such spiritual inclinations and get pretty darn irritated when they get the “You are Special Child of God” or the other extreme “You are possessed by demons!” crap from people or similar Pagan/New Agey versions- “You’re an Indigo Child”, “You did something bad in a past life, and this is your punishment”. There does seem to be a higher than average number of Pagans with various disabilities and medical conditions, how much of that is self-selection or by Higher/Lower Powers That Be is up for debate.

You are transgender, non-binary, genderqueer, gay, lesbian, bisexual, queer, pansexual, intersex, asexual, kinky, yada yada…and once again this gives you a magical ticket to shaman-hood. In various cultures- yes shaman-type roles are often associated with gender-bending/blurring/fluidity and sexual “otherness”,  though it’s important to remember that late 20th-21st century Western identities like I just mentioned above are different from alternate sexual and gender identities found throughout human history and contemporary cultures around the world. We can certainly find a lot of inspiration and ideas from these various identities, and learning about them can put into context how we view GLBTQ+ identities in our own cultural settings, and how they can have collective and individual spiritual meanings and roles. But likewise, a gender/sexual/romantic minority might see their identity in a completely secular manner, or see their identity as mostly incidental to their spiritual role and development.

Disability News Round-Up

I’ve been posting lots of disability-related news on my Facebook, time to share them here!

Neurotribes Examines the History & Myths of the Autism Spectrum– Neurotribes: The Legacy of Autism & the Future of Neurodiversity is a new book by Steve Silberman, a non-autistic man who did wild things that many autism organizations were seemingly not capable of doing (sarcasm) – actually interviewing and listening to people with autism and taking us seriously! He suggests that we channel money into actually helping autistic people rather than researching genes & environmental causes to prevent us from existing. Thank you, Steve! (just don’t read the comments- anti-vaxxers)

The Disability Community’s Bechdel Test– Cast disabled actors whenever possible and tell better stories (Note: comparison to the “Bechdel test” is kind of a misnomer) Still, read it anyway.

Dear Disabled Person, We’re Sorry but You’re a Real Inconvenience, Signed (Insert Conference Name Here) A post from last year, but still just as relevant. I’ve often noticed people running events think of accessibility in various forms as an extra, an add-on, like a luxury. When it determines whether someone can come to the event at all, or fully participate, clearly it’s not a luxury! It’s a basic necessity. Though I imagine there are probably ways we can always improve, I think it made a big difference in planning BECAUSE- Bisexual Empowerment Conference, A Uniting Supportive Experience last year that we had multiple people with different types of disabilities & medical conditions both on the planning committee and on the board- Deaf, learning disabled, psychiatric/mental ill folks, chronically ill folks, folks with various type of mobility needs, food allergies etc.

Right to Independent Living for Right to Suicide- Sisters of Frida, disabled women’s group in Britain

I *am* in support of euthanasia as an option in extreme circumstances- such as being towards the end of a terminal illness. However with current situations, both in Britain, the U.S., Canada and pretty much everywhere we need to focus on creating a society in which *life is worth living* for everyone. I think we also need to build more intentional, inter-generational communities- biological nuclear families are only one option. Putting supports in place for independent living is important, but *interdependent living* is I think even more key.

My new blog- Way of the Sacred Fool begins!

Hey folks- my first post on the Witches & Pagans website is now live! It’s called Way of the Sacred Fool- it’s an exploration of disability & neurodivergent spirituality. I will be continuing this blog, but my writing about spiritual dimensions of disability will be there. The W & P folks prefer exclusive content, so I will be linking the posts to this blog. If you don’t already have one, create an account on Pagansquare and you can comment on my blog. (They won’t spam you I promise!) I welcome thoughts from people of any belief system, so long as they are Pagan-friendly.

I’m feeling a bit of synchronicity as it seems I keep seeing writing on related themes- like Were Hildegard’s Visions Caused by Migraines?

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

1. 

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?

Improving Online Mental Health Self-Help Culture

Online mental health self-help culture has its pros and cons-  most of these are also true of other medical conditions and disabilities- particularly ones that are less well-understood or acknowledged by mainstream health care professionals and institutions. These are some observations I’ve made after long-time participation in autistic adult & neurodiversity communities. Note that I am far more familiar with helping adults with autism & parents of kids with autism than say, people who have bipolar disorder or schizophrenia.

Pros:

* Spread of good information about mental health, self-help techniques, both mainstream & alternative mental health resources

*More access to information & support particularly for people in under-served populations- uninsured, low-income/working-class people, people of color, GLBTQ individuals, folks with disabilities in addition to mental health issues, people in countries or regions that have minimal or non-existent mental health care

*People finding community, sometimes pride in neurodivergent, mad, disabled and queer identities.

*More understanding for family, friends, community members and mental health professionals

*Advice on how to navigate healthcare/social service/education bureaucracies, and less conventional ways of accessing basic needs (barter, sharing, crowd-funding)

*Peer supported/confirmed self-diagnoses for people who might have a harder time accessing formal diagnosis. Sometimes a person later gets an official diagnosis, services and accommodations.

Cons:

*Spread of bad information on mental health, ineffective or inappropriate self-help techniques (either for everyone or for specific individuals) Framing either mainstream or alternative mental health structures/techniques as either 100% good or bad.

*Professionals & family members who are otherwise unaware of the broad range of mental health self-help communities may see more extreme factions and assume they are representative of the whole. But this is a problem with every subculture, internet or otherwise- especially if something is either unfamiliar or someone is already prejudiced against it, they will pick the most extreme version of it, and that’s the part that becomes most well known, even if it’s a small minority. (This is why respectability politics never works!) And if some part of the media gets involved, well St. Dymphna help us!

*False self-diagnoses that lead to a person to engage in self-help and self-medicating that harms them, spreads inaccurate information about a condition to others. (I’d add “uses self-diagnosis as an excuse- but those of us with official diagnoses are so frequently told that “we’re just using X as an excuse, it’s all in your head, not real, that didn’t exist in my day, blah blah” that quite frankly I doubt that many people specifically seek neurodivergent labels for themselves while knowing they are not accurate. Yes, sometimes there are hypochondriacs or maybe even trolls that try to infiltrate communities. But this is not something people seek out to be “cool”.

*Confusion by both participants and outsiders between  identities and subcultures perceived as unusual/eccentric- such as- otherkin, multiple systems, various alternative spiritual beliefs & practices, gender & sexual minorities that *do not* by themselves indicate a person having mental distress issues vs. assuming that if this person claims this identity they must necessarily be mentally ill, add extra stigma helping.

How to we increase positive results of our communities while reducing negative results?

*Self-care and knowing your limits- do what you need to do to take care of yourself, mentally, physically, emotionally and spiritually. If that means taking a break from these communities- both online and in-person support groups, fine!

*Figure out clear boundaries for what you are and aren’t willing to do to help others- a therapist can help with this.

*Get out and be social, hang out with people who are supportive but don’t have mental health/substance abuse issues themselves

*Get lay-level training about how to deal with mental health crisis- both for yourself and others from orgs like National Alliance for the Mentally Ill (NAMI) Note: I know some of my fellow activists don’t care for NAMI- I am just suggesting them as a baseline, you don’t necessarily have to agree with them on everything to learn from them.

*Suggest and redirect people towards groups that focus on resources in their area (I’ve often encountered pleas like “I’m about to become homeless/lose X type of benefits etc” from people without them telling us where in the United States they are, let alone where on the entire frickin’ planet!

*Encourage people to seek out in-person help in their local area, and not wait til things have gotten to an emergency level (or what they perceive as an emergency!)

*Recognize when/if you have a Savior/Martyr/Compulsive Parent Figure Who Must Help/Adopt all the Lost Puppies & Orphans type mentality. Helping people is a wonderful thing! It can also become an addictive and dysfunctional behavior!

*Learn about Minority Stress Theory, and particular issues facing various minority groups that can affect them while accessing mental health care. Learn about different cultural views of mental health

*Share information about how to get professional help, while being understanding of concerns people may have about doing so.

*Moderators of different communities/fora should talk to each other to share information about problematic individuals. Even if some of their behavior is related to their mental health or neurodivergence, that is not an excuse for breaking rules that are clearly stated, being disruptive, or harassing and bullying other people. Hence why, in these communities in particular to clear rules that all participants agree to, and steady & active moderation. Confidentiality is also a must.

May Personal Update

• Went to the May Day festival in Minneapolis, tabled for the Bisexual Organizing Project, had fun handing out Bi Pride/Ally stickers. Entertained myself by talking with the MRA (men’s rights activists) in the booth next to us. (Hey, even if I disagree with them, there wasn’t anything in their agenda that was anti-bi or anti-GLBTQ) I think I mostly confused them!
• Have started a NeuroQueer Facebook group for the Upper Midwest– If you are not on Facebook but want to be connected, please e-mail me at caelesti AT gmail dot com. We’ll be planning workshops for next year’s BECAUSE and hopefully other GLBTQ and disability conferences and events.
• There is also now a NeuroQueer book club, so people from any location can join, and we’ll be reading things that are either out of print/copyright or Creative Commons, so screen-reader accessible docs will be posted on the group. The reading for May is This Bridge Called My Back: Writings by Radical Women of Color Finish date May 26th. Oh! Upon a search apparently this is now back in print just this April! I’ll let them know and this may change our reading plans…
• Going to the Northern Dawn Covenant of the Goddess Beltaine ritual on the 9th.
• Scheduled my driver’s test for the 12th! Wish me luck!
• There is an ADF Upper Midwest retreat in June, which I need to register for- I managed to convince Dan to come along!