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!

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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.

Finding my Path Again

As Paganicon approaches, I find myself re-evaluating my (rather dormant!) spiritual path. I think for the past year, with the depression, it’s kind of like I’ve been wandering through the mists and need to find the path again, only to find it rather hidden and overgrown. I need to do some weeding, replace broken pavement stones and such. Being a caretaker of an old house, these home maintenance analogies come very easily to mind!

My main focus has had to be managing the depression, becoming active and involved with my communities in a sustainable manner that helps me get away from sitting at home alone stewing in my thoughts. One aspect of that has been becoming a Director of the Bisexual Organizing Project, a way to give myself a job (even if unpaid) with responsibilities that helps me develop my self-confidence and skills. The next step is to psych myself up enough to start looking for work again. I don’t have a specific idea of what I want to do, mainly Please Not Customer Service!!! Or at least not certain types. This time I would like to network with other people with disabilities- particularly learning disabilities/autism/developmental disabilities, and perhaps their family members and so forth.

Anyway, I am ignoring spiritual approaches that others do that don’t seem helpful to my situation (the Put the Gods first type stuff) and looking for ones that do seem helpful. I am looking for spiritual practices that might help me build up my confidence, reduce my anxieties, and re-direct negative though patterns in positive directions. I am not sure if I believe in magic, but if I’m not mistaken there are magical techniques that are more about changing how you think than changing the world around you. Without being totally, The Secret and the power of positive thinking can totally solve your problems!!!

I am also trying to back away from more intense and extreme versions of activism and social justice stuff. I’ve noticed that I feel good about going to meetings and doing things in person, but online discussions have a tendency to get really negative and depressing, so I am avoiding or at least being more selective about participating in them. In particular, climate change/Big Environmental Problems OMG!! are things I avoid, which is difficult because it’s also a big thing at Unity Unitarian. I have sat through at least two sermons about environmental destruction one of which listed in detail all the types of species that were endangered or going extinct that made me cry. It was like, yes I get it, humanity has messed up, and all this bad stuff is happening, but there wasn’t much space in the sermon for redemption, and oh here’s something small and manageable that you can actually do. It just fills you with despair, not a desire to be active. There’s also a lot of elitist baggage involved which is really alienating to someone who doesn’t have much money.

The other political area that I have to get away from for sanity reasons is the anti-capitalism and anarchism. I am not an anarchist, but I hang out with some of them online, and they can be cool people with whom I agree with some things. But a lot of the stuff they write I have to avoid, it’s like drinking a giant depression dose. I am skeptical of capitalism in many ways, and I realize it has a lot of problems but I kind of need to set that aside and well believe in it enough to go find a job, keep it etc. It seems like we’ve gone to the opposite extreme of Keeping Up with the Joneses, to a contest of who can intentionally live the simplest life on the least amount of money, involving the least amount of working for “The Man” and feeling morally superior to people who have regular jobs. When I signed up to be Pagan, that didn’t mean signing up to be poor. Wanting a decent job does not automatically make me Scrooge. I feel like we can’t have real discussions about these things because there is too much political division. Well that was long enough. More on the path development thing another day!

Saint Dymphna

As March rolls around, which means St. Patrick’s Day, my thoughts turn to my Irish Catholic ancestors and their faith, particular the many saints that hail from the Emerald Isle. One lesser known lady is Saint Dymphna- purportedly the daughter of an Irish pagan chieftain who converted and devoted herself to Christ. She is the patron saint of epilepsy, mental illnesses and victims of abuse and incest and runaways. Apparently, her father was horribly distraught after her mother’s death, and looked all throughout Ireland for a woman that resembled her to re-marry. After much searching, his messengers gave up, but pointed out Dymphna, and the king, mad with grief declared that he would marry his own daughter. She fled to Antwerp, Belgium along with the court jester and the priest Gerebran. She was followed by her father and his men, and beheaded. Her body was buried at the church in Gheel and many people came from far and wide to seek healing for their troubled minds and souls. Apparently this town was very advanced for its time in treating mentally ill people humanely, which was rare in the Middle Ages. I need to do more research, but I have gotten the impression that this humane treatment of disabled and mentally ill people was more common in the Early Middle Ages, but then declined as madness and other disabilities became more associated with being sinful or possessed by the Devil.
I also thought the mention of the court jester fleeing with her was interesting, as the role of jester was often played by people with disabilities- hunchbacks, dwarves, and people who now would be considered developmentally disabled- “natural fools”, they were called.

I started adding images of her to my Pinterest shrine to Neurodiverse & Disabled Ancestors. I am not sure if she should be part of it since she herself wasn’t neurodivergent. But by extension this category could include anyone who is especially known for helping or advocating for disabled people. I suppose as the board grows, she may get her own shrine.

So to be honest, there isn’t really clear evidence that Dymphna actually existed as a historical person. Her story is suspiciously similar to various fairy tales about a daughter whose father wants to marry her- the most well-known being Donkeyskin. In many variants, there is some type of garment that belong to the dead mother and the father declares that he will marry the woman who fits into it, and the daughter unwittingly tries on the garment. However apparently, because there has been so many reports of healing miracles, the Catholic Church is like “Eh, hey if it works…I guess that’s cool.” Besides declaring that a saint is not historically legit doesn’t exactly stop people from venerating them. St. Christopher, anyone? Heck, Santa Muerte?!

Symbols of St. Dymphna
Lily- for purity and chastity- it could also be further associated with purifying the mind of disturbing thoughts
Sword- weapon of her martyrdom
Shamrock- since she’s Irish
Doe, Fawn- her name in Gaelic is Damhnait- meaning little deer (dahv-nit)
Symbols for specific neurological/mental conditions, recovery/support for abuse victims/survivors

Caelesti’s Devotional Ideas-
Naomh Damhnait would be her name in Irish (Naomh= Saint, related to the word for holy/sacred)
Write prayers for her, write healing prayer that includes both her and St/Goddess Brighid
Read Deerskin, Robin McKinley’s feminist adaptation of the Donkeyskin tale type
Work on your own recovery, engage in self-care, stop and smell the lilies
Donate/volunteer/advocate for individuals with mental illness, victims/survivors of abuse, rape and incest
Support feministy/social justice-y women religious (nuns) and Catholic women in general who are working on reform.

Oh teh noes- is this Cultural Appropriation?!!! Just in case anyone asks…
Well, considering that term is generally used for historically or presently oppressed and colonized cultures- Ireland would fit that, but at the same time, Saint Dymphna is part of the Roman Catholic Church *in general* which has had pretty serious issues with colonizing and oppressing cultures from around the world. We could even say women, and sexual/gender minorities are groups that have globally suffered colonialism from various sources, not just religious. Personally, I feel some solidarity with social justice and feminist focused Catholics, and drawing on these traditions a little is a way for me to reclaim and connect with Irish history and culture, instead of just ignoring centuries of Catholic Ireland and digging back into the pagan past while modern Irish people look at me like I’m some crazy American. Anyhow, there are particular saints that have a lot of cultural context attached to them- as in Afro-Caribbean and Latin American syncretic traditions and if you are honoring saints syncretized with Orisha and such, I’d advise doing it within the social protocol and rules that are internal to those traditions. These are things you’ll need to find out from actual human beings rather than Llewellyn books and Tumblr. Anyway, those are definitely outside of my cultural bailiwick, so I am stepping off the soapbox.

Saint Dymphna: Out of the Shadows of Mental Illness

I am having trouble posting links again- but just Google her- you’ll find tons of prayers, amulets, prayer cards etc.

Cultural Diversity thru Autistic Eyes

One of the reasons I, as a person with white-skin privilege, enjoy and prefer being in culturally diverse environments is because I’m autistic. One of the reasons for this is that, when you are in a culturally diverse setting, everyone’s a little more autistic! That is, since people are coming from different backgrounds, with different social norms and expectations, everyone is going to feel a little awkward, and the shared culture that develops has to be more flexible by necessity in its expectations. I find the diversity functions as a slight “camouflage” to my social oddities. I’m a bit of a “foreigner” within my own culture.

The problem is when teachers and other professionals are teaching socially “normal” behavior, that using eye contact, body language, tones of voice, small talk and so forth are default neurotypical universal human behavior, when in fact they are specifically teaching *white middle class American* neurotypical behavior. When I go to autism conferences and organizations, this is very much the dominant cultural viewpoint, from both teachers, therapists and parents alike. Autism groups are typically about as white (racially & culturally) as the cast of Friends. In terms of training of professionals and education of parents on how to deal with autistic students and adults, this creates a very troubling paradigm for children and adults on the spectrum  and their families who come from other cultural and class backgrounds. Being “color-blind” and “culturally neutral” is a giant joke when the population of special ed teachers and autism therapists is overwhelmingly white (and female for that matter). I strongly support making an active effort to recruit people of diverse cultures into special education, therapy, social work and other professions that work with people with disabilities, not just for shallow skin-deep diversity points, but to actually include and integrate different cultural ways of thinking, learning and ways of being into these very culturally white professions. I also figure families and communities of color care just as much about their disabled members as white folks do, but we don’t hear from their voices enough in the mainstream media or disability-focused media and organizations. That really needs to change!

*There are also differences in how Black, Latino and Native children are labelled and treated, as compared with white and Asian children- I will discuss that further in another post.

Self-Care Virtues: Self-Advocacy

Of all the Nine Noble Virtues, the one that I most wanted to re-write/re-frame from a disability-inclusive perspective was self-reliance. Even from a historical view-point, it does not really make sense. A tribe or village or household had to rely on itself but an individual did not have to be completely self-reliant unless they were utangard– cast out from society and left on their own. This “virtue” seems to be more of an influence from extreme individualist capitalism than ancient Norse culture.

The Greek Delphic Maxim of “Know Yourself” also comes to mind. From what I understand this is often seen as “know your limitations, know that you’re human, mortal, imperfect”. This sort of idea is a lot more emphasized in Christianity, but in European polytheist traditions we often go to the opposite extreme of proving how awesomely heroic we can be, how many mystical, magical powers we can develop and so forth.

Self-advocacy is a movement among people with disabilities, particularly developmental/intellectual disabilities. Self-advocacy means explaining your disability or health condition to others, and advocating for accommodations, equipment or other considerations that you need.  When growing up as a child with a disability, parents and others do advocacy for them (well hopefully they do!) but as a child gets older, he/she/zie needs to learn to effectively self-advocate for themselves. Non-disabled people do self-advocacy as well- a pregnant woman might ask for accommodations in her working conditions, a left-handed student might ask for a left-handed desk, and so forth.

Being a self-advocate is different from being a disability rights activist, because it is only asking for getting your own needs met, and not trying to change broader social structures to make society accessible to all. However, being an effective self-advocate can be a great step towards becoming an activist.

Resources:

History of the Self-Advocacy Movement– Interesting that it started in Sweden!

Speak Up: Your Guide to Self-Advocacy

Self-Advocacy: What’s That?

So Call Me “Retard”

What I’ve found even more pervasive than racism in online communities- Geek, Heathen, Pagan,  whatever is the highly “creative” ableist insults. Racist fucktards, and New Age flufftards.  Wow, that is sooo clever! Just take apart the word “retard” add a new prefix on and ta-da! New insult! Of course just plain ol’ retard still does the trick. Look at me- I’m an autistic person that understands the use of sarcasm! And empathy for all those people you’re insulting, yes autistic people actually are capable of that too! Guess what, I actually know a lot of people with mental disabilities who have accomplished what you haven’t- graduating from high school! Apparently you’re still in elementary school because that’s kinda the maturity level you’re showing when you call everyone that disagrees with you “retard”, idiot, imbecile, spastic, etc. And in fact, plenty of kids in elementary school actually know that those words are not OK to use, and learn to treat their peers with disabilities with respect!

So, yeah internet trolls. Bring it on! Call me retard! To my face or on this blog! Then we’ll know who really are- a coward and a bully!

They tell me this is just some fake phony arbitrary “political correctness”, I’m just suppressing your right to free speech.   Ableism isn’t a “real” ism, everyone loves people in wheelchairs and Down Syndrome kids! (Because they never grow up, am I right?) They even have that law that protects them- the ADA! It’s been so effective in making sure everyone can get the employment, housing and other services they need! Or “those disabled people” all get checks from the government so they have nothing to whine about. Just like Indians all get rich from casino money, right?

Calling racists stupid or crazy is also part of a misconception. People are not racist because they are stupid. They may be illogical and lacking critical thinking skills, certainly. Wanting someone else to blame for their problems- it’s the Mexicans taking the jobs away, it’s the “welfare queens”, whatever. It’s all much easier than realizing that the upper class has been screwing you over for generations by pitting poor whites against poor blacks. It’s easier to go after someone you know who’s cheating on welfare than all the millionaires that do. Because you don’t see them doing it. Out of sight out of mind.

Mentally ill people, actually rarely become violent, in fact they are more likely to be the victims of violence and abuse and this is also the case with people with autism and other developmental disabilities. And as I commented to that fellow on Wild Hunt, why would disabled people support Neo-Nazis, when after all, the Nazis went after disabled people first!