“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!

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?

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?

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!

I Didn’t Become Pagan to Join a Doomsday Cult

I tried being a socialist in college, a Trotskyist to be specific. When I lobbied or voted or did anything that was part of “the System” they sneered at me and told me it wouldn’t work. And sometimes it didn’t. But sometimes it did. Progress was made. Sometimes it was lost. When I was working at Macy’s, I knew my co-workers weren’t wistfully waiting for the Glorious Proletarian Revolution. They were waiting for better wages, health care, paid sick time, child care. Fresh food that they could afford in their neighborhood. Sometimes, yes the anti-capitalists put on their suits and lobby for those things, or simply create grassroots solutions, like raising money to hand out food to people. Great awesome. But oftentimes they are too busy yelling that socialists in suits that have “sold out”.

Anarchists and Socialists are all about ideology and no practical solutions. I am not naive. I struggle what to do with myself in capitalism, and I rent out rooms to low-income people who often have to choose between repairing their car, or eating or paying the rent. I know we don’t live in a sustainable system. But all John Michael Greer, Rhyd  and others write is filled with despair, not practical solutions. Oh, maybe JMG has a bunch of suggestions about how to be a Perfect Eco-Homesteader Survivalist, I don’t know. But I’m trying to *recover from depression* (that was yes, somewhat related to trying to find a place in “The System”) but reading stuff that rages against it with no redemption- wow why don’t I just join a Doomsday cult? I also personally know both homeless people & wealthy people- so neither one is to me an Evil Other. Among Pagans, I have not found any help or support in finding employment. Just a bohemian version of a ghetto/victim mentality. Same with left-wing groups I have worked with. There’s always someone else with a better resume they can hire.

Whenever I see any Pagans managing to be financially successful, or get a building or anything off the ground, everyone else gets mad and tries to tear them down. Oh no, you’ve sold out to the patriarchy/Christians/capitalists etc. Well look, I am going to go out there and find decent work, and then I am going to help my fellow autistics and other disabled folk find it too. Because guess what? Being a eco-doom blogger does not pay us anything!  I might even commit the horrible selfish crime of having a baby! Because no true activist or spirit-worker could ever do that! Totally fine if you don’t want kids, but I feel like others think I’m selfish and don’t care about Mother Nature if I do. The Pagan movement will die from lack of support for its own and infighting. If anyone wants to join me, I’ll be with the Unitarians. Not that they are perfect but at least they aren’t a Doomsday cult. I am still a socialist at heart and I’m still a Pagan and a polytheist but I will be looking to work with people who will get things done in the near future- regardless of their ideology or religion or lack thereof. I’m not waiting for your damn revolution.

State of Mariah’s Life & Disability Networking

The stuff at the top of my priority list currently is:

1) Getting ready for the BECAUSE Conference the weekend after next- trying to meet with the 2 other presenters to prep for the Neurodiversity/Bisexuality workshop we are doing. I can’t remember if I’ve discussed that here before. Well I now I have!

2) Cleaning up this house (because it needs it, and also I am trying to find a renter for the upstairs room) I am sick of  finding roommates thru the usual channels (Craigslist & sign on the street) after many bad experiences from both. We will this time for sure do criminal background checks. Since it is now me, Dan, and Dan’s brother living together it would be nice if we could get someone like-minded to have a more family-like environment.

3) Finding cleaning/household chore gigs, and networking with other disabled folks re: employment. I am starting out doing cleaning gigs for people I know, live in the neighborhood etc. Advertising to the general public on Care.com & such may not work as well yet, because those places assume you will have lots of experience as a “professional” (for Hestia’s sake, it’s cleaning, not accounting!) have a car and will be carting around your own cleaning materials. I do want to get my license, actually owning a car will necessarily have to come later. I may just do this temporarily, I just am really sick of the usual job-hunting routine and just want to frickin’ start earning money.

A) Gwyn-

Am doing a few things to network with other disabled folks. My friend/neighbor Claire (who I also clean for) connected me with Gwyn, a lady who has a brain injury who is looking for work. She said we seemed to have a lot in common. We’re planning on getting together next Thursday before the conference. It turns out she lives in a western suburb, so we’ll meet somewhere in Minneapolis.

B) Spectrum Connections-

Among my many meetups I belong to is one for teens/young adults on the autism spectrum & their families. They have social events throughout the metro (many of which I can’t get to!) but there is one coming up this Saturday in St Paul that I’m planning on going to.

C) ADAPT-

There is a chapter of ADAPT (disability rights group) that meets monthly at a the Rondo Community Library close by in St Paul. I went to one of their meetings several months ago. They are doing good work, supporting legislation for increasing hours for state-funded PCAs, increasing pay for PCAs etc. Found out about this because one of the leaders is also in Take Action. Very cool, however I realized I mostly need to focus on my employment and some social support from other disabled peeps- in person not just online!

D)  Autism Society

I have in the past attended several Autistic Adult support groups that meet monthly. The Autism Society of MN’s office is close by, I can bike over there. They have a general support group which attracts many people from all across the metro. Even when they divide up into smaller groups in different rooms that focus on specific topics it still feels too crowded for the office. I like the Autistic women’s support group better, I think mostly because it is smaller and seems less whiny!

The Neurodiversity group which meets at a different location in St Paul (which I always have trouble finding!) coincides with Bi Salon (2nd Thursday of the month)

E) Autism Conference- the Autism Society of MN’s conference is later this month (after BECAUSE) I am probably not going. I have in the past attended & enjoyed it, right now I don’t feel like shelling out the money for it. Frankly it would feel like a bit of a let-down attending a conference run by non-autistic people after going to a bisexual conference run by bisexuals! Which we specifically planned to make affordable & accessible! I enjoy that feeling of empowerment. I don’t get that from the so-called “autism community”.

Reclaiming Autistic Identity

To give a little more background about my experience growing up autistic- I had been mainstreamed all throughout my schooling- with an aide from 4th grade thru junior high. The aide was mostly there to help me keep calm, or whisk me out of the classroom if I had a meltdown. (Before then, my mother was sometimes called in!) In Northeast Iowa there is a separate agency- the Keystone Area Education Agency. My parents said this had worked really well for them and other parents and their kids for advocacy purposes because it was independent from any one school district. As my dad putting “Having the school district in charge of allocating special education resources is like putting the fox in charge of the henhouse!” When we moved to Minnesota, my brother and I both had personal aides as required parts of our IEPs (though neither of us had them in high school) whereas we knew students with similar labels who were denied that option because the label of Asperger’s in particular was deemed “too mild” to need an aide. (This is one of the reasons the Asperger’s Syndrome label was removed from the new DSM)

My parents explained the labels to us, but we rather rejected them as they mostly sounded so negative, it just seemed like an insult from doctors who thought they knew everything. My parents even held a school assembly to announce our status without our frickin’ permission! (They claimed that students and staff were more accepting as a result, but I still think that was a horrible choice. I’ve forgiven them since then!)

When I had the opportunity to go to Camp Discovery, a summer camp run by the Autism Society of Minnesota for ASD kids ages 10-21, this changed as I got the chance to be around others like myself. One of the biggest things for me was that each cabin had a Mentor, an adult with ASD who working there. Ruth-Elaine was the one in my cabin. This was incredible! I had grown up with an autism community that only acknowledged as us non-verbal 5 year olds that were seen as a “terrible burden” and “tragedy” (with of course parents rushing to reassure listeners that of course they still loved their child) The only person with autism that had, apparently managed to reach adulthood was Temple Grandin. These are still obnoxious tendencies that I encounter, but things have changed a lot!

Anyhow, after attending camp my view of autism changed. I no longer saw it as a disability, but as a difference, though one with some aspects that were easier for me (and others!) to deal with than others. I reclaimed it as an identity from the know-it-all doctors and scientists and parents, and made it my own. At some point I discovered other autistic adults with similar views online, on the Autistics.org website, writings by Amanda Baggs (now Mel) Laura Tisconik, Jim Sinclair and many others. What was also cool is that many of these writers/activists are also queer-identified! I became a participant in what later became known as the Neurodiversity movement, advocating for a view that there are as many types of minds as there are people, and that we should be included and understood on our own terms, rather than expected to conform to a narrow concept of “normality” (or neurotypicality).

I attended Camp Discovery a couple of times as a camper, as did Dylan, my brother, and I also became a Mentor myself for 7 years! I decided to step away from that position to allow others to take it, as for many of us it is the first job we manage to get, or the first one in which we can really be ourselves. I was also asked to speak many times by Kari Dunn-Buron, the director of the camp and a professor at Hamline University’s autism education program. I spoke on (paid) panels about my experience on the spectrum at autism conferences and classes at Hamline. When Kari retired a few years ago, I lost that key connection, and I’ve been meaning to re-connect. However, I am really interested in doing speeches rather than just panels where I answer certain questions, as there are many issues which are not addressed. I want to focus more on discussing transition and employment issues, and dating, sexuality and relationships. I also would like to tailor speeches for different audiences- parents, education professionals, social work & healthcare workers, and so forth. And yes, I’d like to get paid, though I do not expect to make my entire living doing this! (Getting my driver’s license will make this work a lot easier!)

See also: Against Parent-Led Autism/Disability Organizations

Reliable Transportation

Reliable Transportation it says. Must Have Reliable Transportation.

So smug, with your Reliable Transportation.

Never fails, always starts, always works.

Always on time. Good worker.

One cold day it fails. Won’t start. Taxi. Late.

Still, good worker. Like one of us.

Another time, you met a client after work.

Late again. No parking! Can you believe it!

I park and lock my bike to any vertical object.

No, sorry we can’t hire you. You don’t have- Reliable Transportation.

Well I suppose, you actually know how to ride the bus?

Don’t trust this worker. Not like us.

Bus breaks down. No need for taxi. Just wait for another.

Late. Only once. Fired.

Was this a necessary for the job? Or just a barrier?

Like a very expensive piece of paper, a very expensive piece of metal is required.

Responsibility. Reliability. Adulthood.