Monthly Archives: September 2010
“A diagnosis is just a tool to get you what you need,” said a good friend of mine, by way of his therapist. His statement particularly resonated for me because for a long time I’ve been a woman without a diagnosis. This article is about why I am finally OK with that.
First of all, it’s not entirely true that I don’t have a diagnosis: I’ve been given many different diagnoses by many different doctors. Some of these labels are simply descriptions: atypical facial pain, idiopathic neuropathy. Some of the labels don’t really fit me or have that lovely word “Syndrome” at the end of them, and I’ve become so aware of that word I eventually started telling people, jokingly, that I simply have Syndrome. Some of the labels given to me were taken away later, misdiagnosis: “you don’t actually have asthma, you have paradoxical vocal fold movement!” (a voice disorder that mimics asthma).
I have learned some huge lessons from all my time spent in the medical-industrial complex: doctors don’t have all the answers, and that a good doctor is one who says, “I don’t know.” Also, chasing after a diagnosis, endlessly, is a game with steeply diminishing returns. You might get a diagnosis that is wrong. You might never get one at all that gets you what you need, especially if what you need is outside the medical system entirely. I spent hours and hours with doctors and nurses, trying out dozens of medications, and in the end I accomplished very little. Meanwhile I invested all kinds of desperate hope that the next specialist might be able to help me. I am not advocating giving up hope: I am advocating having realistic expectations about the medical system. Investing all my hope, time, and energy in finding a diagnosis and/or treatment for my ailments was not effective nor enjoyable. Years later, I am basically in the same state of health that I was when I first got sick.
I have reached a place where I am quite comfortable not having a diagnosis. I’m sure the medical system does not agree with nor support this stance. Everyone must have a label, otherwise how will they know what box to put us in, which specialist to send us to?
I say about myself that I have chronic pain and illness. I have a disability. If people want to know more than that, I will tell them about my experiences, my feelings, my activities as a disability activist, the way I live my life. Many people seem to want a label, and for a long time I did too: something to say to the pharmacist, the people at work, my extended family; something simple, something people could understand. People understand things like migraines, like diabetes or anemia.
There are certainly concrete benefits to having a diagnosis: If I had a diagnosis I could use Google to learn more about my illness. I could perhaps find support groups populated by people with my same illness. I could perhaps get government disability benefits. These things are not impossible to get without a diagnosis, but they are harder to find. There are, for example, support groups and counselors for people with chronic pain, which my medical system eventually referred me to.
But what I really needed to find was the social justice community. What I needed, and eventually found, was disability identity. Right here are the tools I need to help me live a life with pain and illness. Here is a supportive community, coping techniques, theory, friends. A person doesn’t necessarily need a diagnosis to live here. ?
Sharon and Barnum over at After Gadget have it in mind to begin an Assistance Dog Blog Carnival. The majority of the information can be found at their blog:
I love blog carnival and blogswarms. I try to participate in them as much as I’m able (which is a lot less often than I’d like). Lately, it’s been occurring to me, with the blossoming of so many new, thoughtful, lush, sassy assistance-dog blogs that it might be time to start an AD carnival or to do a blogswarm.
However, this would require many interested participants:
– Sites to host the carnivals (if we went the carnival route);
– Bloggers to submit their posts;
– Readers to read the blogs!
Sharon is asking that anyone interested, or with feedback, answers to the questions posed at After Gadget, please leave them in the comments section there. I hope that you can show some support for this, and if you know anyone who might be interested, please feel free to pass this information along!
ETA: Several people have brought up concerns with this survey in the comments, including the AQ test that is at the end. You may want to check the concerns in the comments before deciding if you want to take the survey.
I am an active autistic self-advocate and autism researcher (PhD student, educational psychology). I was wondering if you could take or pass on an autism spectrum-related online research survey I helped to develop?
It received full ethical approval from the review board and contains
consents within it. I think it is sensitively written and it is open to feedback.
The survey is examining the relationship between the autism spectrum and Internet use, identity, and visual perception. Please note that scores are completely anonymous and it’s for any adult or child of at least 7 years in age.
We especially need people who are diagnosed on and/or self-identify as on the autism spectrum. Participants can get help in completing it if needed.
Here’s the link: Survey Monkey Website
It might take about 15 minutes.
Warning: Offsite links are not safe spaces. Articles and comments in the links may contain ableist, sexist, and other -ist language and ideas of varying intensity. Opinions expressed in the articles may not reflect the opinions held by the compiler of the post and links are provided as topics of interest and exploration only. I attempt to provide extra warnings for material like extreme violence/rape; however, your triggers/issues may vary, so please read with care.
Can you believe it already the end of September?
The Vibrating Square: Respect (Sent in by The Untoward Lady)
But it’s not about intent. It’s not even about the very real impact that such language has on people like me. It’s not even about the fact that what you said is hurtful.
Brilliant Mind Broken Body: After the Separation (Glad you are well again and home, Kali)
But I went through 2 1/2 days of my service dog not wanting to have anything to do with me, and that was their fault for separating us. I went through more pain at the hospital, I was alone, and I had to deal with days of my service dog ignoring me. If it weren’t for them, all I would have had to deal with last week was a nasty stomach virus.
Jessica says Continental offered her a couple of coupons to make good — one for 10 percent off of a flight and another for a free drink. She says she’ll need to give them to a friend because she’s given up on flying for the time being.
The perfect last day of a California summer drew a collection of advocates, supporters and community representatives to the Stockton Rural Cemetery. The gathering honored hundreds of people who had died anonymously while residing in the Stockton State Hospital, established in 1851 as the state’s first “asylum” and closed in 1996.
World-famous singer-songwriter and UN Messenger for Peace Stevie Wonder called on the international community to take action to enhance accessibility for all those with physical disabilities. Speaking at the opening of the annual meetings of World Intellectual Property Organization (WIPO) Assemblies on September 20, 2010, he challenged delegates to conclude an agreement on improved accessibility to copyright protected works by visually impaired persons (VIPs) within a year.
Lisa Harney is a single lesbian with ADHD, three cats, and a penchant for writing about social justice and transphobia. She blogs regularly at Questioning Transphobia.
So one of the most frustrating experiences of coming to terms with my disability is realizing just how much ableism has impacted my life without my realization. I mean, I knew that this stuff was not really fair or reasonable, but I didn’t really know why.
When I was in the first grade, my teacher told my mother she thought I had a learning disability. My mother’s goal was to prove that I had no disabilities at all, so she had my intelligence tested and I was categorized as “gifted.” It was also determined that I was nearsighted, which required me to wear glasses. Somehow, unfortunately, neither of these solutions actually helped with my problems: I had trouble retaining what the teacher said to me, and I had trouble doing all of my schoolwork.
In retrospect, being marked as gifted was mostly negative. It meant I had more pressure to perform well, that I should be a straight A student, but I never managed this. My report cards are littered with “doesn’t pay attention” and “doesn’t apply herself” and other negative assessments that read to my parents as “Lisa doesn’t fulfill her true potential.” Now, of course I wanted to, but to me grades felt almost like an arbitrary lottery. I never got grades commensurate with the effort I put into class, and no matter how much effort I did put in, I’d get in trouble when my report card had too many Cs and Ds. There was a reason I could make it to the spelling bee state finals and do calculations in my head, and yet still couldn’t maintain any kind of consistent quality of work.
This had repercussions at home. I learned from my father that I was stupid, lazy, inconsiderate, and selfish. I learned these lessons really well. I internalized them. Somehow I was convinced that I was really sabotaging my own school work. His conviction in my potential wrongdoing was such that he would grill me about what I did at school every day once I got home, and the right answer was always “I didn’t do my schoolwork.” If I said I did, I’d be punished for lying. So I learned to lie to him because the lie was the only acceptable answer. And he convinced me I was an inveterate liar, so it was interesting to realize once I got out on my own that I was total rubbish at it.
So yes, from most of my teachers as well as my father, I learned that I was pretty worthless; that I was stupid and lazy. That my problem was that I refused to apply myself and spent too much time daydreaming, or reading novels, or playing games (role playing games, mostly). That everything I enjoyed was a personal flaw, and that everything I failed at defined me. And this has stuck with me for a long time.
This carried through into my first long-term relationship – which was also abusive. But my partner liked to especially pick on my inattention, my tendency to zone out in the middle of a conversation, my forgetfulness, and insisted on treating me as if I was a child to be controlled instead of her girlfriend. She went beyond this, but this itself is apparently a common pattern in relationships with ADHDers – that a parent-child dynamic develops. This is often framed in articles and literature and by non-ADHD spouses and partners as something the ADHDer is totally responsible for, and relationship problems are often blamed entirely on ADHD, but the non-ADHD partner’s ableism is practically never discussed. And being treated like a child, having every mistake scrutinized and berated and everything you do ignored and forgotten takes a huge toll on you. It’s abusive. My partner was abusive in many ways beyond this, so I don’t want to make it sound like her ableism fueled all of the strife, but it definitely had an impact.
Every attempt I made to enter college hit a wall. I would do really well (and learned I was not in fact lazy or stupid) until I couldn’t anymore. I don’t really know how to describe it. I wanted to get my degree, but once I hit that point, college went from doable to extremely difficult. It may have been changes in routine, greater difficulty in classes, overall stress from spending that much energy to excel constantly without a break. I don’t really know. I just know that I would hit a point beyond which it was very difficult for me to continue. And that I didn’t even know how to find support or assistance, that I don’t feel resources for this were really clearly explained to me if they existed at all. And besides, maybe I was lazy and stupid, right?
Most of my jobs went the same way – I’d do a job well until I couldn’t keep it up any longer, and I’d often have to quit because simply going in was difficult. Again, this is hard to describe, how this works. It is not that I wanted to lose my jobs or that I did not enjoy them, but that I’d end up being unable to continue, or that I’d find it difficult to meet basic requirements like punctuality. And I’d be left wondering how I could have sabotaged this amazing job, and how lazy and stupid I must be and how much I must hate myself to make these choices.
And this really was a spiral of self-hatred and recrimination that continued until the past few months. That I was holding myself to standards I had no idea I couldn’t attain without help, medication, accommodations. That my knowledge of ADHD, the background cultural knowledge was so lacking in information that I really had no idea how to start looking into this, or even that there was anything to look into. I spent more time wishing I had done everything better, that I hadn’t made so many mistakes, that I hadn’t lost two promising careers, that I hadn’t apparently done everything in my power to block my own success. That I had no idea I was not only limited because of my neuroatypicality, but because there simply wasn’t any easily accessible information that would have helped me realize what was happening to my life. Even when I saw doctors about my GAD and panic disorder in 2003, the possibility of ADHD never came up.
Since I wrote my two posts about ADHD on Questioning Transphobia, I’ve had several people tell me in comments, e-mails, or chat that they related strongly to the symptoms I described, that by making my experiences with ADHD accessible, people who have been undiagnosed so far – who might themselves have ADHD – know about the possibility and can respond to that information. According to at least one researcher – Dr. Russell Barkley – it is possible that only 10% of ADHDers who have gone undiagnosed into adulthood are diagnosed as adults.
I am not saying that experiencing ableism without even realizing you have a disability – let alone what ableism is – is worse than experiencing ableism when your disability is known. Just that it was a dark moment for me to realize how much of my life has been defined by ableism, and how much I had no defense mechanisms at all to cope with that and how much I had to realign my own understanding of decades of my own life. The end result is good, in that I was able to resolve a lot of my own self-hatred, but the realization itself was a bit shocking.
Interested in submitting a guest post to FWD? Read our call for guest posts here for more information!
Back in July, the following letter/response ran in Dear Abby:
Dear Abby: I am the parent of a child with special needs. To an outsider he looks different; adults and children stare at him when we’re out. My son is not aware of their impolite behavior, but I am — and it really irks me. What should I say to these insensitive people? — Boiling Mad in New Jersey
Dear Boiling Mad: I don’t think you should say anything. It is not unusual for individuals of every age to do a double take when they see someone — or something — that is “different.” Of course staring is impolite, but unless someone makes a remark or asks a question about your son, you should ignore the person.
Abby got some reader mail in response, so she decided to run a column featuring some of the letters she received. As FWD readers know, I am not a fan of the euphemism ‘special‘ and I dislike labeling basic needs as such. However, it’s very common, so I pretty much expected a thicket of ‘special’ this and ‘special’ that in Abby’s column. But I also expected at least one letter from a person with a disability, because Abby has run letters from us in the past on topics relating to disability issues.
Were my expectations met? No, they were not. The title of the column is ‘Special-needs kids build bridges of understanding.’ Three of the five letters were from mothers of children with disabilities and they all pretty much said that we have a responsibility to educate people staring at us:
…I now regard it as an opportunity to educate them about autism. I hand them a card explaining it that contains a link to the Autism Society of America.
This tactic, rather than ignoring people, is the way to go. If more people educated others, the stares and rude comments would become smiles and support.
One letter, well, here, I’ll give you the first paragraph:
I worked with special-needs children for a number of years. I actually believe that it is good when people stare. It gives us a chance to help the child learn social skills.
I’m one of those folks who “stare” at others. By no means is there ever a bad intent. I’m a people-watcher. I love watching people communicate in different ways, like signing. Whether someone is in a wheelchair or has a visible disability, I value each and every person.
Maybe “Boiling Mad” doesn’t understand that many of us are willing to reach out, lend a hand or just be friendly. I wish to embrace, not ignore, and I hope my behavior isn’t perceived to be offensive.
So, we heard from parents. We heard from people who are a fan, evidently, of the ‘tough love’ school of thought; staring makes you stronger! And we heard from someone who likes to stare at people.
We did not hear from anyone who gets stared at. Ouyang Dan, writing about a different advice column involving the nondisabled gaze and what to do about it, pointed out:
I get extremely uncomfortable and irritated with people who can’t manage to be polite and respect the privacy of other people. “Othering” is a concept that riles me pretty good, and othering people based on circumstances beyond their control is right up there on my list of things that will get you “unfriended” or “unfollowed” in a keystroke. Beneath that is treating people with disabilities as if they do not have a right to privacy when they are in public with you. As if their existing in a manner that you find abnormal is somehow negating their right to eat lunch without you staring at them.
Abby’s decision not to represent any people with disabilities in her column is noted. I’m willing to bet that some people with disabilities wrote in about how much they do not like being stared at, to point out that when everyone is staring at you, it is most definitely perceived as offensive. It’s not ’embracing’ at all to feel like you can’t go to the grocery store, ride a horse, sit in the library, or do any number of other things without people gawking at you. Being stared at is not fun.
It is also not an opportunity for a teachable moment. People going about their daily business are not diversity educators. They are human beings, doing human things, and just wanting to get those things done. Having to question whether or not you want to go out on any given day because you don’t feel up to dealing with stares is not enjoyable.
I don’t know how to deal with staring. I get stared at a lot and it upsets me. Ignoring people doesn’t quite seem to work. Staring back sometimes shames them into looking away, by reflecting their gaze back on them and forcing them to consider how it feels to be stared at, but I really have a hard time with eye contact and often staring back at people forces me to meet their eyes. Sometimes I say something like ‘pardon me, is there something on my…’ and then they mumble and look away. But I definitely do not feel like it’s my responsibility to educate people when I’m going to the post office or having dinner with friends. They can go educate themselves. Or they can pay to take a workshop where I would be more than happy to educate them in a structured classroom environment.
As always, these are jobs that I come across in my web-readings, they are not endorsed by anyone here in any way, and I cannot answer any questions about them. I only have two today: The first is in the UK, the second in Canada:
Trauma FX Ltd employs amputee actors – male and female, aged at least 18 years old – and special effects make-up artists who are contacted to work throughout the UK providing Casualty Simulation (CASSIM). Further details at the website linked above
Program Coordinator, Volunteers with Disabilities
Application Deadline: February 2, 2010
Volunteer Ottawa is a direct support organization for more than 300 not-for-profit and voluntary organizations in the community and is a critical link between volunteer energy and community need through its promotion of volunteerism to individuals, groups, workplaces and schools. Volunteer Ottawa is a resource for training, consultation and materials for all not-for-profit organizations and public institutions in the Ottawa region, and helps them build their capacity to engage volunteers successfully. Volunteer Ottawa is a leader, partner and educator on issues that impact on the voluntary sector.
Reporting to the Manager of Programs, the Volunteers with Disabilities Program Coordinator is responsible for the development, implementation, coordination and evaluation of the Centre’s Volunteers with Disabilities (VwD) Program. The VwD Program Coordinator may also be required to take on other responsibilities relating to the overall functioning of Volunteer Ottawa.
• Ensures that all contacts made by potential program partners, current program partners, persons with disabilities and other interested parties are responded to effectively and efficiently
• Coordinates the Volunteers with Disabilities Program outreach activities (Fairs, marketplaces and speaking engagements)
• Is responsible for the delivery of workshops and presentations
• Coordinates one on one guidance sessions
• Provides leadership, consultation, advice and guidance on all aspects
of accessible volunteer services management to nonprofit organizations
• Completes member agency site visits to evaluate, assess and make recommendations to increase program accessibility
• Manages volunteer resources, including recruitment, placement, training, supervision and evaluation of program volunteers/students
• Prepares reports and evaluations
• Community college diploma in social services, relevant field or
• 1–3 years relevant experience working with persons with disabilities,
such as providing community-based services including outreach, education, and community development, personal experience beneficial;
• Knowledge of the voluntary sector and understanding of the volunteer
• Experience in reporting project deliverables;
• Excellent communication and interpersonal skills;
• Oral fluency, reading and writing ability in English, French an asset;
• Ability to work flexible hours
• Strong computer skills essential
• Ability to multitask and meet timelines
• Able to work independently and as part of a team
Volunteer Ottawa thanks all applicants for their interest. Only those selected for an interview will be contacted. Volunteer Ottawa is committed to hiring a workforce inclusive of the diverse population it serves. This is a 19 hours per week, 12 month contract (possibility of extension) @ $18/hour.
Please mail or e-mail a resume and cover letter to:
402 – 2197 Riverside Drive
Ottawa ON K1H 7X3
For more information visit: www.volunteerottawa.ca
Joesphine King is an artist with bipolar disorder who produces startling and evocative self portraits.
Josephine King remembers her first self-portrait and how it showed up out of nowhere. She was “really ill” with bipolar disorder, living alone in a flat in Amsterdam. “I was in psychosis. I was desperate, not at all well in my head. I thought, the only thing to do is a painting.” She worked until a woman emerged against a brilliant pink background. This was the painting that launched five years of obsessive self-portraiture, framed with texts spelling out what it is to be manic depressive. (source)
Originally establishing herself as an artist in ceramics, she turned to portraiture after her diagnosis in 1999.
Each portrait tells a little piece of her story. I really love her use of colour, textures, and shapes and I like that while each picture stands on its own really well, they can also be viewed together as part of a larger narrative about her life and her disability.