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!

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.

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.

Wrestling with God(s)

I’m a thinker who often over-thinks things to the point of worrying and getting depressed and angsty over Big Questions- and even little questions. What Does It All Mean? What is My Purpose ™? Do God(s) exist, if so, who are they, do they give a @#$* about me, and what should I do? In Hebrew, wrestling with G-d means Israel. As I was discussing in an earlier post, both Christianity & Islam seem to have more a tendency towards “This is the Way it Is. Just Believe and Obey- or you will make Baby Jesus cry or Allah will be displeased” Not always how it is, but those are dominant messages they tend to give us. Judaism, on the other hand often seems to have more space for wrestling with G-d, debating what does this verse mean- there are centuries of texts of back and forth rabbinical debates! I just finished watching a both hilarious and insightful web series called Dude, Where’s My Chutzpah? by filmaker Jessie Kahnweiler. http://www.dudewheresmychutzpah.com  It’s about a woman (based on Jessie herself) in her 20’s who is wandering rather aimlessly thru life, but then after her devout Jewish grandmother dies, the rabbi gives her a challenge based on her Bubbe’s wishes- to spend a year finding her “chutzpah” and figure out what it means to live a Jewish life/be Jewish. I don’t think I’m spoiling much when I tell you that Jessie finds the answers lead to even more questions! But seriously, go watch, regardless of your belief/cultural background, it’s fun.

So what does this have to do with Paganism/polytheism/UUism/Spiritual Label of the week?

I guess we Pagans are typically more concerned with what we do, and how and why we do it, rather than what we believe. I think theology and what we believe does matter to some degree, but it’s ok to be uncertain. It’s part of being human. John Beckett had some good wisdom about this- advising “Practice Deeply, Hold Beliefs Loosely” and keep re-examining your beliefs. Don’t get so stuck on them that they become obstacles. Of the many discussions over What Does it Mean To Be Pagan?! (oh teh angst!) one that struck me the most was from Steven Posch, an elder Witch of Paganistan*, who is generally more into Actually Doing Stuff than just arguing about how to do it online. He thinks Pagans are a people…an emerging culture. There are many ways to be Pagan, and it’s an essence that transcends and defies all our attempts to define it! We are a diasporan people, by choice and chance rather than historical circumstance, having to figure out who we are as distinct from the dominant culture(s), and varying at how much we differentiate ourselves. Now maybe you identify as Pagan, but don’t see yourself as part of “a people” or a culture. Once again, it’s not a perfect comparison with being Jewish, but really nothing is. Something to ponder at least.

As I’ve been exploring the polytheist faction that is branching away from Greater Pagan-dom and the Heathens who in large part already see themselves outside of it, I’ve realized that my people and my culture can still be found among the Pagani, and moreover the overlapping geeky subcultures that surround it. I am still a hippie Romanticist tempered with some pragmatism, practicality and post-colonial critiques of Noble Savage & Orientalist mindsets that pervade. I am not a Genuine Heir to Traditional Gaelic Polytheism, Irish or Scottish culture, ancestry or no. This does not mean I am phony, I am quite honest about who I am.  I think we sometimes have this haunting feeling of insecurity because we are not Authentic Enough ™ According to who? Anthropologists? Scholars of ancient religions? Sneering evangelicals or secular atheists? If we were that worried about “What Will The Neighbors/Interfaith PR reps/mainstream media Think?” we wouldn’t be Pagans, would we?

But seriously, look at other cultures that we think of as More Truly Authentic- y’know the ones we often feel tempted to “borrow” from because we need to jazz up our shabby American-Euro-mutt stuff? Native Americans for example- many of them have lost much of their traditions and culture. Many of them combine their cultural practices with Christianity. They create new practices as the need arises, or creativity inspires them to do so. Even more so- look at your fellow descendents of immigrants from around the world. What have they brought with them? What have they left behind? How have they adapted what they brought to fit in with their new environment? What have they added in from American culture and made their own? How has this been passed on to other Americans to the point where forget its origin? There are many German, and specifically Deitsch (Pennsylvania Dutch) customs that have sunk into the American mainstream- Groundhog Day, Christmas trees and translated carols like Silent Night (Stille Nacht), the Easter bunny and dying Easter eggs.

More about “tradition” and authenticity- https://paganleft.wordpress.com/2014/01/10/authenticity-whats-traditional-anyway/

*Paganistan- his term, now widely adopted for the Twin Cities metro area Pagan communities.

More Recent Discussions on Mental Health & Resources

In addition to Camilla Laurentina’s post that I just re-blogged, here are some other posts on mental health- some related to hers, some not.

*Newly added as of 9/24–

“If You Just..” .by Nornoriel Lokason

On Fibromyalgia & Spiritual Emergency by Beth Lynch

Pride in Madness: Suicide is Not Just a Depression Problem (response to a HuffPost article)

Loki’s Bruid (Heather Freysdottir) Let’s Talk About Mental Health

“I am a firm believer in the notion of using both holistic and western medicine to treat my own physical and mental health – and I still find it odd that we separate out mental – that is stigma, right there. Isn’t your brain in your head, which is part of your body? I have used both conventional and hypnotherapy to treat my PTSD, because my therapist uses both methods, and I picked her for her woo-friendliness. Yes, therapists can be asshats about mysticism. You know what? So can doctors and specialists. You know what you do to a doctor or a therapist who doesn’t respect your opinions about your body? You fire them and go find another.”

Let’s Talk About Health & Social Services Emergency & Community Resources PermaPage (PDF of social/health/housing etc. services in Central Florida)

Another resource I found useful is Chronically Skeptical, which is a forum/info page for folks with chronic illness and disabilities (including mental illness) that is free of alternative health treatment claims/magical/mystical stuff etc. Even if you are open to some of those things, this is a place you can do without having them shoved unwanted in your face. I think this would also be good for the autism/autistic community. It’s more of a problem in parent-oriented groups, but now and then I get people in the adults with autism communities who latch onto unproven “treatments” for autism. Blech.

A couple of useful articles I found via Chronically Skeptical: 6 Common Misconceptions about the Chronically Ill (Note: bad language use- should be “chronically ill people or people with chronic illnesses” not “the disabled, the homeless, the deaf etc)” Otherwise, decent article.

The Extra Burdens Faced by Young People with Chronic Illness A Sign of Strength? Commentary on a Facebook meme that seems well-meaning but sends misleading and harmful messages about mental illness. Unfortunately that describes a lot of Internet memes!

Disability and Health Disparities for Lesbian, Gay, Bisexual Adults

There are significant disparities in the quality of health, and access to healthcare between American gay men, lesbians and bisexuals and the heterosexual population.  Lesbians and bisexual men and women also tend to do worse than gay men, and transgender folks have even more cards stacked against them, I’m not even covering them quite yet!

Disability Among Lesbian, Gay, Bisexual Adults: Disparities in Prevalence and Risk– January 2012

Results. Findings indicated that the prevalence of disability is higher among lesbian, gay, and bisexual adults compared with their heterosexual counterparts;lesbian, gay, and bisexual adults with disabilities are significantly younger than heterosexual adults with disabilities. Higher disability prevalence among lesbians and among bisexual women and men remained significant after we controlled for covariates of disability.

Conclusions. Higher rates of disability among lesbian, gay, and bisexual adults are of major concern. Efforts are needed to prevent, delay, and reduce disabilities as well as to improve the quality of life for lesbian, gay, and bisexual adults with disabilities. Future prevention and intervention efforts need to address the unique concerns of these groups.

“Similarly, controlling for the disparate health-related conditions for lesbians (smoking, arthritis, obesity, and frequent mental distress) and bisexual women (smoking, arthritis, asthma, and frequent poor physical health and mental distress) only slightly reduced the disparity in disabilities compared with heterosexual women. These findings indicate that although prevention efforts for lesbians and bisexual women and men should focus on reducing the disparities in the disability-associated health conditions, unexplained elevated disability may remain for lesbians and bisexual women and men, which warrants further exploration. In addition, further research is needed to better understand other risk factors that may account for the higher prevalence of disability among LGB adults.”

Health Disparities Among Lesbian, Gay, Bisexual Older Adults– June 2013

RESULTS:
LGB older adults had higher risk of disability, poor mental health, smoking, and excessive drinking than did heterosexuals. Lesbians and bisexual women had higher risk of cardiovascular disease and obesity, and gay and bisexual men had higher risk of poor physical health and living alone than did heterosexuals. Lesbians reported a higher rate of excessive drinking than did bisexual women; bisexual men reported a higher rate of diabetes and a lower rate of being tested for HIV than did gay men. Conclusions. Tailored interventions are needed to address the health disparities and unique health needs of LGB older adults. Research across the life course is needed to better understand health disparities by sexual orientation and age, and to assess subgroup differences within these communities..

 

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!