“If, of thy mortal goods, thou art bereft,
And from thy slender store two loaves
alone to thee are left,
Sell one & from the dole,
Buy Hyacinths to feed the soul”
- Muslihuddin Sadi,
13th Century Persian Poet
“If, of thy mortal goods, thou art bereft,
And from thy slender store two loaves
alone to thee are left,
Sell one & from the dole,
Buy Hyacinths to feed the soul”
- Muslihuddin Sadi,
13th Century Persian Poet
I have not bought a Valentine’s present for my husband. I am divorcing him.
Disabilities can change how the processes of falling in love, joining, living together, loving together, and separating happen.
For most disabled people, their disabilities affect how others perceive them as even being interested or capable to find love or sex. (WTF?!)
For many disabled people, their disabilities can even change whether or not others afford them even the opportunities to find love or sex. (Again, WTF?!)
Although my husband and I both have disabilities that have changed how we are employed, communicate with each other and others, parent our children, or even sleep together (literally and figuratively), the divorce had nothing to do with our disabilities. It’s just about the usual sorts of moral failings that can lead to divorce (even after the sensible year of counselling to assay changes).
Because in the end, love and sex do not happen because people are able or disabled. They happen because all people are people. And when love and sex quit, they happen because all people are people. Just people. Like everyone else.
This post is (slightly belated) part of Dave Hingsburger’s “Sexy Bloggers” blog carnival on disabilities and love/sexuality, over at his blog, Chewing the Fat.
15 November 2008 at 18:55 (ADD/ADHD, Advocacy, Arthritis, Auditory Processing Disorder, Autism/Asperger's, College/University, Coping strategies, Doctors, Dyslexia, Eye contact, Family, Hypermobility, Love & Acceptance, Migraine, Pain, Prosopagnosia, Stress, TMJ (Temporomandibular Joint Disorder), Tourette's / tics, Work / Employment)
For the first time in months and months — far longer than it should have been, but there we are with the insane busyness of life — a friend and I got together at her house for dinner.
“You look like you’re finally relaxing,” she said after I’d been there a little while, and we decided to not wait in conversational limbo for the third person (who never did show). “You were so stiff when you came in,” and she made reference by some expression (that now escapes memory) of how I was indicating being relaxed by behaving more normally.
Not “normally” in the er, Normal (neurotypical) sense, but me-normal, where I felt comfortable enough to sit and rock slightly, to not worry about making eye contact, to get a bit flappy at funny events or when agitated, to shed the pent-up motor tics. To just be me. To “let my hair down” and to set aside unnecessarily restrictive social norms. To eat my chicken and rice with a fork, and the still-crisp cooked green beans neatly with my fingers (as one does with fries or asparagus), because her table was Nicely Set for our aesthetic enjoyment and yet we weren’t standing on formality.
We talked about typical stuff, like the foibles of spouses, the concerns for college-age kids, the drudgery of eternal home repairs, the quirks of cats, of temperamental computers and the thrills of new mobile phones, of career changes, and the vicissitudes of economic times.
We also talked about atypical stuff, like the difficulties of college education and employment when dealing with various educational/neurological disabilities, of managing arthritis pain and joint issues, of the wonders of TMJ bite blocks, of dealing with the profound cluelessness of the general public for the extreme pain of migraines and how hospital Emergency (A&E) is a horrid place to physically be when in the throes of gut-wrenching-head-splitting pain and the snarkiness of some medics therein.
Crip chicks like we don’t diss on our disabilities, we diss from our disabilities. It’s not poor-pitiful-me whining but the healthy pitch-a-bitch whining from someone who understands, even when our respective glitches are not all issues shared in common.
I need more social life, but there’s so much of ordinary socialising that I find enervating.
I’m not antisocial; the interest in socialising is not a binary form, where one either does it or doesn’t do it. But over the years I have learned what I actually enjoy (as opposed to what one is “supposed to” enjoy). My intro/extroversion levels vary wildly because some kinds of social interaction are nothing but draining, while others leave me (if not physically) at least spiritually recharged.
I’m not fond of socialising by large quantities of people all chattering with each other in the same room, where the conversations get all blenderized from my Auditory Processing Disorder, to where I end up trying to tease apart sequential fragments of half a dozen unrelated conversations, fruitlessly trying to follow just one voice or two, and reasoning out from fractured context what some of the mis-heard words could possibly be.
I’m not fond of socialising where the content gets watered down to less-consequential subjects of chit-chat, by dint of less privacy and some unwritten code of how long one is “supposed” to entertain time with another guest before moving on, and by the other unwritten rules of conversational quid pro quo, where my monologuing to fully deliver a story complete with back-explanations and thesis statements delivered at the end is discouraged in favor of witty repartee.
I like the time to mutually share and analyse our respective news, and the real, content-laden answers to our mutual questions of, “How are you?” The real “How are you?” question, not the fluff of “How-are-you?” or “How-was-your-day?” that is the social minefield trying to distinguish between polite interested query of acquaintances and polite disinterested query of associates (that latter social coin that is all form and no content), or the mental quagmire of trying to answer “How-was-your-day?” when the question is so vague and our answers are so experientially linear and tangential instead of whatever the hell others were expecting.
I was comfortable — we both were comfortable — because together we had created a social environment that enabled our mutual comfort. It was an agreement that had been developed by long familiarity and by various conscious decisions over decades, to create a friendship that fulfilled our individual needs over the culturally-proscribed forms. True friendship enables positive interactions, and supports needs and affirms and enriches our lives.
Here’s a toast to real friendships!
7 August 2008 at 17:42 (ADD/ADHD, Advocacy, Attribution Errors, Autism/Asperger's, College/University, Communication, Community, Developmental disabilities, Family, Learning Disabilities, Love & Acceptance, OMG, Parenting, Work / Employment)
The Kid recently took the ACT test, which like the SAT, is frequently used by colleges to determine scholastic abilities, and in his case helped place him for which college writing class he needed. He had to ask his sister what the test was like, and her impressions about its difficulty level. I could not personally provide any opinions, because I had never taken the ACT or SAT.
I never took them because no one thought I would go to college.
They made massive assumptions about my abilities and my future. So here’s what happened, and something to think about. I welcome you to please post comments, and more links to other positive blogs and sites.
My grades in secondary school grew worse over the years, and I had to re-take a semester in one class (English of all things, which in later years proved to be ironic when I became a freelance writer, with hundreds of items in print).
By this time in my life, my parents had divorced. My dad lived in another state, and was even more of a non-player in my life. Alas, my mother had spent years futilely trying to make me more “normal”, from requiring me to learn right-handed penmanship, enrolling me in a “charm school” at the local Sears & Roebucks to improve my feminine graces, and so on. But as the years wore on, my faults (problems) became more and more apparent. She no longer described me as “very bright”, but was quick to list all my failures and describe them in damning detail, until I was ready to vomit or pass out from the stress (though I never did, even though either would have been a relief).
By 9th grade it was apparent to all that I was not gifted scholastically, and the general consensus was that I was lazy, stupid at math, not trying hard enough, and acting up just to make her life difficult. When she was drunk, my failures and interests and personality traits would be compared to her ex-husband’s, “you’re just like your father, the bastard”. Even as much of a socially-clueless 14 year old that I was, I knew that these kinds of comments were untrue and inappropriate, and the problem was with her attitudes and her drinking. But they still hurt, terribly.
I would not be diagnosed with ADHD, Auditory Processing Disorder, and Prosopagnosia until I was in my 40′s. Such diagnosis hardly existed in those days; certainly my difficulties were not considered to be due to anything but my own personal failings.
No way, my family and school officials decided, could I be college material. I could not keep track of my assignments, I still struggled to learn and remember my multiplication facts into 8th grade, and I flunked or barely passed classes.
Given my social difficulties and subsequent lack of dating, and even my utter lack of domestic abilities (mom warned me off taking a sewing class because doing so would “ruin my GPA” – grade point average), I was obviously not highly marriageable. This was the 1970s, and most people still thought along those lines — an astonishing number of girls went to college to “get their MRS”.
The goal then was to get me some kind of minimal trade training, so I would, as she fiercely reminded me many times, not be a burden on the family. It was made plain to me that once I graduated high school, and then later turned 18, I was to be out on my own. I should not expect financial assistance from her.
So I was enrolled in typing, which was a miserable experience beyond the whole ordinary ordeal of learning to type on manual typewriters. The room was a cacophony of noise. The instructor was adamant about constant attention to task, proper posture, and graded with the intent on us producing perfection — as soon as a student produced a typographical error, then the score was made. (Additionally, the students’ pages were held up to the light against her perfect copies to check centering and spacing). There were many days when I would produce an entire page that was otherwise perfect but for a typo in the second line, and my grade would be an F because I had such a low word-count. Given my problems with developing manual speed, tracking text (near-point copying), attention, and transposing letters and numbers, I struggled to get a C grade.
But the clerical work that was deemed best for me also required taking bookkeeping. Not surprisingly, this was also a very difficult class for me. My aptitudes and interests were not really taken into consideration, because after all, even if writing and science and art were what I liked best, I had not done well in those classes, now had I? Besides, clerical work was what my mother knew, so like many parents she expected me to follow occupational suit.
Unlike many such students, my story has a relatively happy ending. I did manage to graduate high school, to everyone’s relief. A year later, I even enrolled in an evening class at the local community college. College classes were not easy, partly from my intrinsic difficulties, partly from not having the necessary study skills, and partly from not having a solid academic background.
But the glory of the American system is that such colleges provide opportunities for adults of all ages to acquire the these things, and to gain higher education. I worked hard, and slowly figuring out how I learned, which was not always in the ways that others thought I should study. Sometimes I had to drop a class and re-try it later on, to finish it successfully. Later on in my 40′s I was to also get some of my issues diagnosed.
I now have a Master’s of Science. I teach college students. No one would have expected this based upon my previous performance. (Employers who place near-complete trust in Behavioral-Based Interviewing, please note!) And this point, amongst all the others about the perils of attribution errors, and learning disabilities, and dysfunctional families, this point is crucial:
A child’s future abilities cannot always be predicted,
when based upon their current abilities.
Many parents of children who have developmental disorders worry that their children will never be able to attend school, or finish school, or go on to college, or hold a job, or live on their own, or be loved by a partner, or have a family, or talk, or be potty-trained, or any number of milestones. Just because the child cannot do the same things that their age peers can do, or are expected to do.
This is one of the biggest points of contention or discussion between the “autism community” (parents of autistic children) and the “autistic community” (children, teens and adults who are autistic, and many of whom are parents as well). Even beyond the farcical assumptions that either community is monolithic with regards to attitudes and knowledge and politics et cetera, there are inherent issues that need to be mutually addressed.
One of the best resources for the autism communities are the autistic communities. If parents go around just talking to other parents, especially those other parents who are consumed by the “Terrible Tragedy and Selfless Suffering Families” world-views, they may fall prey to this easy assumption: If my child can’t do it now, he’ll never be able to do it, and our lives will be ruined.
Sure, not everyone takes it to that extreme. Sure, there are a few children who do not achieve many of those life-goals. But those lack of achievements does NOT automatically mean that their lives are ruined, or their families’ lives are ruined. They do NOT automatically mean that people cannot live relatively happy, healthy, and productive lives.
Please do NOT assume that not being able to use speech as a reliable means of communication is the same as not being able to think, or not being able to communicate, or not having anything to communicate.
Please do not assume that because a child does not learn in a traditional manner that they are learning “the wrong way”, or that they cannot learn at all, or that they must be taught “remedial learning lessons”.
Please do know that even when children have problems, and are slower to acquire skills, they are not doomed.
Please do not give up on them.
“Don’t talk to me like I’m an idiot.”
~First words (at age 35) of an autistic man [quote source]
I welcome you to please post comments, and more links to other positive blogs and sites. Kindly see the newly-updated “NOTES TO COMMENTERS” box in the top of the left sidebar for important information. Read the rest of this entry »
Elizabeth McClung of the Screw Bronze! blog.
This beebalm flower struck me as being kinda goth-like in form, so I spiffed it up for you, because more is more. Thinking of ye, gal, take care!
(Apologies for unsettling anyone’s recent meal.)
My news aggregator came up with this doozy of a quote the other day. It was an editorial reply to an article about Kathleen Seidel, and I’m not going to quote the entire letter. (Follow the link to read it yourself — if you want to reply to the author, do so on that newspaper’s reply page.)
I am one of those parents who has watched my autistic son go from being a vegetable to becoming human, thanks to chelation.
Okay folks, let’s get this straight.
These are vegetables:
These are children:
It is quite insulting at the personal level, and damaging at the social level to describe people with autism or another other condition as being “vegetables”. Doubtless the author believes that their child has improved due to the effects of an unproven “treatment” for an unsubstantiated diagnoses (e.g. autism as mercury poisoning from vaccines). But even if the diagnosis and the treatment actually had any factual basis, that would still not make such comments appropriate.
How would YOU feel if your parents described you as a “vegetable”?
Or as “having rotting brains”?
Or as a “train wreck”?
Or that your condition “relentlessly sucks life’s marrow out of the family members”?
Or as “an empty shell”?
Or as “soulless”?
Or that “Autism is worse than cancer in many ways, because the person with autism has a normal lifespan”?
Or as having “mad child disease”
Or that you “would have been better off aborted” because regardless of your aptitudes or potential skills, your existance is automatically assumed to be a “burden on society”.
I’m not making these terms up; you can google them. People with disabilities face enough stereotyping, discrimination, abuse, bullying, and are murdered more often than those without. (I’m not using hyperbole; click here or here.) Describing disabilities in such sensationalistic terms and derogatory ways does nothing to help people become better educated, better integrated into society and employed, or become better accepted in their schools, workplaces, social organisations and families.
More than that, one really has to wonder, What kind of parent describes their child in such insulting ways? And does so to the entire world? Such treatment to children over their lives does not bode well for their psychosocial development, that’s for sure.
When you hear people describing their family members, their students, peers, coworkers, or anyone else they know in such terms, take a moment to ask them,
But most of all, we need to be mindful when we speak up about such hate talk, and not use similarly disparaging terms. We don’t want to become that which we despise.
(A request to people commenting: please use appropriate language — follow the guidelines described in this post.)
Sometimes after a child gets a diagnosis (or diagnoses) the parents begin to realise many of the same issues from their own childhoods, and on through adulthood. In our family it took the opposite route. It took years to really see the aspie qualities of my kid, partly from unfamiliarity, and partly because in a geeky family like ours … most of those qualities are “normal”. Not until the teen years did the social issues, the APD issues, and ADHD-related educational issues really become unavoidable. The tics went away after several years, as happens sometimes. But I think there was less “denial” as there was unawareness and a sense of internal normalcy: “this is just the way we are”.
A very nice article by Benedict Carey illustrates this: Your Child’s Disorder May Be Yours, Too
Mr. Schwarz, a software developer in Framingham, Mass., found in his son’s diagnosis a new language to understand his own life. His sensitivities when growing up to loud noises and bright light, his own diffidence through school, his parents’ and grandparents’ special intellectual skills — all echoed through his and Jeremy’s behavior, like some ancient rhythm.
His son’s diagnosis, Mr. Schwarz said, “provided a frame in which a whole bunch of seemingly unrelated aspects of my own life growing up fit together for the first time.”
It can alter the present, too, if parent and child have enough common ground. Mr. Schwarz, the software developer in Framingham, said he became in some ways like a translator for his son, who’s now 16.
“I think there are a lot of parents of kids with these diagnoses who have at least a little bit of the traits their kids have,” Mr. Schwarz said. “But because of the stigma this society places on anything associated with disability, they’re inhibited from embracing that part of themselves and fully leveraging it to help their kids.”
Our understanding of diagnoses mean changes over time, and we leave or entirely skip that stage of grieving over not having a promised “normal” child, or possibly even viewing the issues as horrible things that must be cured at all costs. Instead, we find that our children are different rather than damaged, and that we ourselves are oft times different as well. We move from grief to acceptance, and realise that acceptance is not the same thing as resignation.
In fact, we do not have children with broken wings, but we are in many ways flocks of different kinds of birds, not unlike the diversity of finches that Darwin found in the Galápagos, all adapted for slightly different niches. After all, we don’t all need to be penguins attired in identical tuxedos.
This old poem of mine is posted for Whitterer and all the other mums and dads out there.
The last bowl of cereal –
the children will want some too,
if they see you eating it.
The latest edition
of the science magazine
while going potty.
The “Travel” section
of the newspaper
at the dentist’s waiting.
Counting the seedlings
under the basement lights
while shuffling laundry.
Watching finches feeding
outside the window
washing the dishes.
Writing a letter
to the distant friend
before everyone else awakes.
Sorting color blocks
with the youngest
while the eldest is at Kindergarten.
Discussing the eldest’s latest theory
of dinosaur extinction
while the youngest naps.
before the baby loses a pacifier*
and the eldest needs teeth brushed.
… enscribing this poem
between a nap
and making lunch.
* pacifier = binky, dummy
Things I’m thankful for: our eldest’s honey was able to get out of the hospital to have Thanksgiving dinner with us. Not only does this provide us with a new resource for stories (the joy and annoyance of families is the oft-repeated stories), but also someone else to talk with about science and science fiction and gaming and politics, or watch episodes of CSI.
Having a guest means that the all my cooking seems even more worthwhile, and the food gets eaten up more effectively. Having someone extra also provides the necessary impetus to motivate the others in the household to pick up and clean, which I appreciate, even if no one else does. And of course, having a guest means that the four cats have no lack of people to bug for attention, including door-opening service.
With as many computers as people and wireless access, there’s nearly always someone online at some point or another. This is normal for us. Of course, with this holiday-sanctioned break from schoolwork, the kid has been online reading boards or gaming a lot of the time. This morning I was serving up breakfast casserole, and suggested, “Come eat at the table with us; be social.”
Aspie kid’s reply came from the other side of the big computer desk chair, “I was social yesterday.”
This is true; last night the normally-reticent kid’s verbal output nearly matched that for the entire week. So breakfast chatter isn’t on the kid’s menu. That’s okay; there’s still fun social activities like going to the bookstore or a movie. Dunno if that’s what other people do for Thanksgiving, but we’re having fun in our own geeky way. Happy holiday to the other Americans out there!
So I’ve been painting walls, which is something I actually enjoy doing. I pace myself, and switch hands frequently to keep from wearing out too fast. This is the second room of the current painting spree, which means that it’s been nearly a month since I bought the can of paint, along with the other necessary miscellany one ends up getting from a trip to the hardware store. Before I could start painting the room, I had to spackle in a gazillion holes, because it used to be inhabited by a teenage girl who had naturally put up dozens of posters and postcards and drawings over the years, leaving the walls riddled with push-pin holes in much the same manner that the moon is riddled with craters.
That break in time partly explains why I ended up with the wrong color of paint and didn’t notice until I’d applied it to two walls. Read the rest of this entry »
10 October 2007 at 4:59 (Abuse, Accessibility, College/University, Deaf / Hard of Hearing, Developmental disabilities, Gender / Sexuality, Love & Acceptance, Parenting, Physical impairments, Work / Employment)
Wow. Here I was ready to comment on one piece of news, when several more caught my attention. They all revolve around social ideas of gender rôles, and marginalised or disabled people.
This first one struck close to home: Khadijah Farmer was kicked out of women’s toilet of a Manhattan, NY, restaurant because the bouncer thought she looked too masculine.
“I said, ‘I am a woman and I am where I am supposed to be,’” said Farmer, speaking at a a news conference. “I offered to show him some identification. I was told that’s neither here nor there.”
Some people might say that happened “just because” she’s a lesbian (like that’s a valid reason), but I can vouch for the same thing happening to me as well. On the occasion that I wear a skirt or dress, I look “appropriately” female. But since I have a really short hair style, and often wear men’s shoes (because I have wide feet) and men’s shirts (because I have broad shoulders and long arms) and am disinclined toward wearing make-up, I have been frequently mistaken for a guy.
Even my name doesn’t seem to help; just last week Read the rest of this entry »
The perfect bowl.
Neither too shallow, nor too wide. The matte glaze is neither too rough nor too slick. Both the shape and dimensions are just right to hold in my large hands. Lovely to hold when eating, and even warming my hands.
It’s the very quintessence of “bowl”.
Any kind of food looks more attractive contrasting against the black glaze. It’s big enough to hold an adequate amount of food for one meal. Because of its appropriately semi-spherical shape and ceramic composition, it keeps the food warm while I’m eating it. The sides are steep enough to collect tidy lumps of rice with my chopsticks. The curvature of the bottom perfectly matches that of my Lexan tablespoon. (Like lacquered wood, this high-density plastic don’t annoy my teeth the way metal flatware does).
It’s a pleasure to eat from. I look forward to using it every day at lunch time.
Any meal is automatically better with my bowl, be it curry, chile, or cold cereal. I care for it and guard its well-being, as my first one got chipped on the rim from careless handling through the dishwasher. I don’t leave the bowl knocking around the countertop at work, where it can risk being damaged, broken, or permanently “borrowed”.
Doubtless this seems over-meticulous to some people; to them it’s “just a bowl”. For those inclined to labelling, it borders on Read the rest of this entry »
One sentence; two words. Together, two very powerful words.
As the beginning, those two words beg more questions than they answer. Who lied? What about? To whom? When, where, and why? Read the rest of this entry »
“If there is a sin against life, it consists perhaps not so much in despairing of life as in hoping for another life and in eluding the implacable grandeur of this life.”
Random thoughts from the tub (life, the universe, and everything):
Life ain’t fair.
No generation has ever created the world it grew up in.
Every generation has been bequeathed a screwed-up world.
Complaining about that is just so much spitting into the wind.
It’s not what you get,
but what you do with it, that matters.
Some of our limitations are real and physical.
Some of our limitations are imposed by what others say we “can” or “ought to” be able to do,
and therefore are what we think we “can” or “ought to” be able to do.
Some people are born with riches of financial comfort or talent, and squander them.
Others are born with absolutely shitty circumstances,
but make more out of themselves than anyone could rightly expect them to.
People are amazing.
Life is hard.
We accept that there are those things that we cannot change.
We also take responsibility for our own actions.
We are blessed and cursed with the freedom,
for all that we choose to do in life.
If you refuse to accept responsibility for what you do,
you are lying to yourself.
If you refuse to see your freedom,
you are lying to yourself.
Being stuck and “not making decisions”
is really a kind of decision in itself.
Amazingly, being sad and afraid is not giving up.
In truth, it is a position of potential power,
once you cease the lies to yourself.
Life is glorious.
Living creates hope.
Regrets gnaw away that hope.
Life is too short for regrets, for might-have-been’s.
Examine experience, learn from it, choose new actions.
You are responsible for what you do.
You cannot make others happy,
Cannot make everyone believe you,
Cannot make everyone accept you,
Cannot make everyone like you.
Never could, never will.
Move on in life.
Happiness is something you make.
It does not come from what others do.
No one else is responsible for the way you feel.
Your feelings arise from your opinions and positions on events.
This is why different people can have different reactions to the same events.
If you change those opinions and positions,
You can change the feelings that result from events.
We cannot change the past,
but we can change how we react to it.
History is not destiny.
Love is like happiness.
It comes from inside you.
We love people for who they are,
not for who we want them to be.
We accept them for who they are;
this is the love.
One must have love to give love.
One must accept their self for who they are, to have that love.
People with healthy hearts are attracted to others with healthy hearts.
The love between them gives space within their togetherness,
and room for aloneness without loneliness.
To love one person does not diminish the love for another.
Love is expansive.
Love is a resource that is too little seen,
but is actually in infinite supply.
People are amazing.
Life is glorious.