Posts filed under ‘Disability Rights’

“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

March 2, 2016 at 11:58 pm 1 comment

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!

February 25, 2016 at 12:31 am Leave a comment

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.

September 10, 2015 at 2:39 am 3 comments

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?

July 9, 2015 at 2:39 am Leave a comment

Redefine Disability Awareness Challenge/30 Days of Mental Illness Awareness

  1. redefining-disability2

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?

June 19, 2015 at 1:01 am 3 comments

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!

May 6, 2015 at 7:27 am Leave a comment

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.

April 16, 2015 at 11:41 pm 5 comments

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