Apparently I had a conversation about illness versus disability/impairment with a friend some time ago. Golly I wish I could remember that (becuase it is probably more coherent than this one). Either way I will start again. The social model of disability requires that disability be stable and consistent, or so it seems in order to call something an “impairment.” How can an “impairment” be something that changes from day to day, sometimes from hour to hour, and yet from CFS/ME to MS to the neuro-degenerative diseases, that is exactly the case.
I have to wonder, after my meeting with the sports side of disability how much for some “disability” means, X degrees from able bodied? I don’t know. I had “impairments” most of my life and unless you knew me very, very well you would have no idea that they existed. So I was a person who passed for able bodied; but then since my own grandmother had a stroke which paralyzed half of her body and refused to admit it (She would say, “I just don’t FEEL like moving that arm or leg today”), it is hard to know to what lengths I had been taught to hide impairments.
Of course now, the argument could be very easily made that while earlier I might have shared many aspects and experiences of different people with disabilities ranging from MS, Parkinson’s, and to those who use manual wheelchair for a variety of reasons. Now however, and as time progresses, how can I keep claiming "ordinary disability" when the medical assessment is saying otherwise (And in this case I wish to be 'ordinary'). Ordinary people have remissions, ordinary people can have treatment and medications. I want to be in a big fat cluster of people, something where my doctor can say, “well it seems you have moved from this type to that type and so we will change your treatment” instead of “Yes, you don’t heal on your extremities, that is just part of autonomic failure.” SUCK!
So am I disabled? I certainly am not going to start making an identity around my “abilities” because as I have found out repeatedly, in three minutes, in two minutes of a blood clot or loss of oxygen and “Brain go BOOM!” which would mean I now have half the identity I had before (if I base it around my accessible "abilities").
So why then do I keep doing tests and get told how un-ordinary even in the world of disabilities I am? Well I am going to the tests tomorrow because the doctor, who I WILL get to see is on the board of both extreme neuro degenerative diseases like ALS but also on a board and writes papers on genetic neurological terminal diseases. So, I could, in talking to her, access the people who could tell me what may be coming, and then I can plan how to deal with it. I am an entirely selfish bitch and I could care less about “the next generation” if it means I lose X amount of days while and after they run electricity through parts of me and do the “hmmmm….” And “fascinating….”
And yet, in many ways, the online disability family is the family that I know, the family that I have (along with the able bodied supporters), the people I feel safe with. I don’t need to explain that pain make brain go stupid, because they know. I don’t need to explain that I am sure I could have MANY hobbies if things like dressing, eating, breathing, resting, sleeping, and a few emails didn’t take so much darn TIME. So I don’t want to leave the group which quite honestly, has been so welcoming to me. But then again, they use words I don’t understand: remission, "the bright side", optimism, treatment, “had it X years.” I don’t know what it means to have a pain and mobility related disability for 10 years, and when even my nutty neuro woman doesn’t think that I will, it makes me feel, maybe that I am hiding, or lying, to myself. Maybe I am hiding in this family becuase they do care about me, when honestly, if I cared about them as much as they do about me, I would leave so they could help each other, supporting each other in shared experiences.
My arms and hands changed size twice during the nerve test today. The woman said, “I had heard it, but I never would have believed it if I didn't see it, even when you talked about it at the start.” I have to wonder, when I hear talk like that so many days a week, whether I am still within the boundaries of what it means to be human. Yes, I have a consciousness, but I feel more and more like something akin to “spontaneous human combustion.” A ‘incident’, or anomaly that is found in the Fortean Times (or an urban myth?).
Some doctors, including my GP, do not know how certain aspects of my body are working, or still working, or why they work at all. So am I differently abled? I turn green, every day, and purple, and mottled red. “It’s not easy being green.” Is that a disability? Well it is an indication of a symptom which could lead to death if untreated. But is that a disability. Is cancer a disability? I breathe with assistance. Is THAT a disability? I don’t count it as much of an “ability!” It is part of who I am and I know there are disabilities that require assistance in breathing, but then again, as one PT said, "You kind of need to combine many, many "classic" disabilities to explain your needs."
I know that there are people out there who have it worse off than me; I am still fairly privileged, in terms of care, and access to care and even treatment of chronic pain, in the fortune that has had two people give me wheelchairs and plead for me NOT to give them back. I breathe on a regulator given to me.
So here we are at the end of the cup, mucking about in the coffee grounds and I guess I am saying; do you feel comfortable around me? Because I feel a bit like that I don’t meet the criteria, whoever is setting that these days of ANY model of disability except the “Feel really fucked up a lot of the time” model. I mean, the medical people still won’t admit that I am ILL, it is just that the parts of me needed to keep me operational as a human aren’t working optimally, or at all. How exactly is it that they can say you will die, but that you aren't exactly ILL, is it becaue ill implies treatment? The most common phrase specialist at hospitals say to me, "There is NOTHING we can do for you."
Maybe I am not the only person who feels a bit out of the loop when it comes to fitting in? That is why I am FOR disability rights because I am not getting up those steps and NOT able to open that door so put a damn auto button on it please. But how can I speak up for anyone but me, which seems kind of selfish: “Yo, 30 million Canadians, please spend money and educate yourself in case I come to your town….and for the people who really need it and will still need it when I am just a firework in the sky.”
Dunno, no answers. How is that for presenting my anxiety before a 13-15 hour trip tomorrow which involves a) NEEDLES, many NEEDLES and b) intentionally putting lots of electricity through a person (ME!). Is “Scared” a disability identity?
Posts
1 hour ago
24 comments:
I don't know if I belong here either. You are Elizabeth, a unique person who happens to have a rare & very serious illness. I don't want you to leave this community you have created. Illness is scary & uncomfortable to deal with, especially one as serious as yours. I think those of us with chronic illness and those with disabilities should stick together - there is much we can learn from each other.
I have a rare disease - CVID (immune deficiency) and Lupus (autoimmune). My immune system doesn't make antibodies to fight infections but manages to make antibodies to attack my own body. That's not only a seeming paradox, but I imagine it's not a very common experience. And now I've just racked up my fourth autoimmune disease. So while I have hope, I've been treated for my CVID for over 18 months now & still not much better. And my Lupus is severely undertreated because most Lupus meds are immunosuppresive & no one (not me either) wants me taking those.
I think we can all accept one another and if we can learn to understand, all the better.
I, for one, don't feel well qualified to say what disability is or isn't.
I often have trouble knowing if others will accept me as disabled when with ME some say I will make a recovery (though I am sceptical).
Yet I am clearly not able in so many aspects.
The thing is before my illness I didn't walk around indentifying myself as able - I was just me.
When you see people as people it's difficult to lump them into either one thing or another.
I am still am just me. The labels, sometimes comfort me but usually confuse me.
When I draw I am me with no labels. When I go out usually I am disabled because I need assistance. When my husband strokes my face I am me with no labels. When I have a long animated conversation I am sliding into disabled because at some point I will start to slur and mix my words up.
It ain't black and white, one thing or another.
The social model of disability requires that disability be stable and consistent, or so it seems in order to call something an “impairment.”
This simply isn't true. In fact the vast majority of disabled people with physical conditions have conditions which do vary or deteriorate to some extent. Even people with paralysis, amputation or CP have good and bad spells because of complications, wear and tear and so on. You're at the dramatic end of the spectrum, admittedly (or possibly, you are the dramatic end of the spectrum ;-))
If you imagine two buckets and all the issues to do with your condition and subsequent experience written on little bits of paper. One bucket says "impairment" or "illness" or whatever you'd prefer and other is labeled "disability". The social model means sorting these little bits of paper and not putting an unpleasant symptom in the same bucket as an access problem, It doesn't suggest that your overall experience is stable or would be benign without the social stuff, it is just a matter of sorting our what's what. And of course, the content of buckets could vary a lot according to how you're doing as well as what you're trying to do.
I imagine, your first bucket might be overflowing, and the one labelled "disability" may be half-empty. For other peoople, the opposite would be the case.
But you make the point yourself; there is often a chasm between our different medical conditions, symptoms and experience of fear and suffering, between physical, sensory, cognitive, intellectual and mental health impairments. So what do any of us have in common? Nothing to do with biology, that's for sure.
Best of luck with the tests tomorrow!
Well, I've just got the internet again after being offline for about a month, and I was so moved by your post yesterday that I didn't have words to post a comment until today... and when I come to your blog to post it, you've written another post that i feel i need to respond with a relatively dry, intellectual comment to...
IMO, it's a (sadly too commonly held) mistake that the social model requires impairments to be stable, non-progressive, non-fluctuating, etc - in fact, IMO the social model NEEDS to incorporate conditions that are progressive/degenerative, that fluctuate wildly, that cause pain and fatigue, that cause early death, etc (IE all the things that social and environmental change will never be a total solution to), or it's necessarily a failure because it leaves out huge numbers of disabled people.
Parttly this is because most of the original writers who first conceived the social model (Vic Finkelstein, Mike Oliver, etc) did have stable/non-progressive impairments, and because their emphasis was on how society disables people with impairments, they avoided talking about impairment at all, because they were trying to get away from the conception of disability as medical, personal tragedy, the individual's problem, to a conception of it as a civil rights issue, as *everyone's* problem.
Unfortunately this led to a straw man for opponents of the social model to beat, of "you are trying to deny the reality of impairment and physical limitations", and to a lot of disabled people with conditions that cause pain, discomfort, shortened lifespan, etc feeling, because of this omission and/or misrepresentation, that the social model wasn't any use to them...
Later disability studies writers (especially feminists such as Liz Crow, Jenny Morris and Carol Thomas) responded to this by saying what I just said, that the social model needs to embrace, not ignore, impairment and embodiment, and to draw on feminist approaches to the sociology of the body in doing that - and in particular that admitting that there are aspects of impairment, such as pain, shortened life expectancy, etc, that you would rather have "cured" DOES NOT make you a "traitor" to the social model.
I'd strongly recommend, if you can get hold of it, Liz Crow's essay "Including All Of Our Lives" in the edited collection "Encounters with Strangers: Feminism and Disability" (ed: Jenny Morris, The Women's Press, 1996) which covers this territory extremely well...
Sorry for the length and wordiness of this comment, I think i've half turned it into one of the blog posts i've been meaning to write... ;)
I'll say what i was going to say last night in another comment...
Beth, I'll be sending positive energy all day today. Despite your phobia, you will survive the test, even if you don't want to at times.
Regarding safety and hiding, or feelings thereof, I think you'd better redefine those words to yourself, duckie. Telling the world exactly what your brain did to you this time, and explaining how much you don't like needles, testing vibrators online with photos!), and posting EVERY DAMN DAY from Japan is NOT hiding! You're the most honest, un-hidden person I know, including me.
And as for feeling safe here, I think it's YOU making ME feel safe. I have to thank you again for that feeling of safety, Elizabeth. You and the whole mixed-up family that keep writing to you, or reading and lurking (yeah, we know you're there, statistically speaking, so feel welcome to reply or lurk as you feel comfortable!) - you've all welcomed me into your extended family despite my apparent able-bodied nature.
If a person is deaf or blind they are recognized as having a disability. I'm living without a sense of smell: does that make me disabled? It was an advantage for my wife when diapers were extra smelly, though *I* didn't see the humour in the situation. And my wife has saved a small fortune on perfume, though I have told her that if it makes her feel better, she should wear it. Laugh if you want to, but I'll be very careful never to live where there isn't someone to detect natural gas for me.
Two of my sons are red-green colour deficient; are they disabled? Son D commented once that he actually saw a traffic light as green - they're normally white to him. But if they take up hunting (not likely!), they'd have an advantage, because they'd see through animal's natural camouflage better than I could.
Everybody's differently abled, Beth. I can't run up stairs the way I did 5 years ago. Hell, I can't run more than 10 metres these days; my knees won't take it. But I can bicycle as far as I want, or have time to. Son LG is differently abled in that, at 11 years old, he can comfortably sit and read with both feet tucked behind his head. His hips appear to be the only hypermobile part of him though, except for his imagination.
I forgot where I'm going with this, dammit. Differently abled memory I guess. but Elizabeth, you're the matriarch of this family. I don't know what'll happen to "the family" when you're not here any more, and I certainly don't look forward to that time. But you're here now, and I'm asking that you stay because you're making me comfortable and welcome. All of you are, so thanks to everyone reading today!
If you can't think of anything else good today, Eliabeth Family McClung, think of how much you are loved.
And if you do come to town, I'll warn everyone on City Council, so they CAN make the place ready for you, and Gaina, and Dawn, Wheelchair Dancer and everyone else. Just let me know first, okay? I'd love to meet you in person!
And yes, Beth, it's fear talking in your entry today. I can tell. Take courage, love, the test will only SEEM like forever.
Mnay tight hugs,
Neil
You have hit a truth that I think gets missed a lot. Doctors have a model based on what they understand about the human body, which is not the same thing as understanding the human body.
I'm working with identity issues right now, and I recognize the not fitting in struggle. I suspect that may be part of the process. I know this: your writing is deeply human. I think that operating from a selfish position which allows you to connect to your own humanity gives you a bridge which allows you to connect with other humans, so your selfishness doesn't seem wrong to me.
"Maybe I am hiding in this family becuase they do care about me, when honestly, if I cared about them as much as they do about me, I would leave so they could help each other, supporting each other in shared experiences."
No leaving. Part of this caring, famly is being here and supporting you regardless of whether you feel like you deserve it.
I know that the definition of disabled as used by the US Federal Governemt is "having any permanent physical or mental condition that severely limits one or more life activities." Life activites include, breathing, hearing, seeing, speaking, walking...
Applying that definition - in the US you would be considered disabled.
You ask "How can an “impairment” be something that changes from day to day, sometimes from hour to hour..."
It's an impairment because in spite of the frequent changes the basic impairment isn't altered. With neuro-degenerative diseases the basic impairment that severely limits one or more life activities doesn't go away during these changes.
You ask if we are comfortable around you. I can speak for myself and say that I am.
I will be thinking of you today and trying to send you good vibes and strength through the ether.
So here we are at the end of the cup, mucking about in the coffee grounds and I guess I am saying; do you feel comfortable around me?
Yes, I do feel comfortable around you because I feel like I know you and that I am part of this journey.
But how can I speak up for anyone but me, which seems kind of selfish
But by speaking up for yourself, you are speaking up for the 30 million disabled Canadians.
Do I feel comfortable around you?
Of all the questions that have ever passed through my pumpkin head, that is not one of them. You are interesting--not as a problem, but as a person, let me hasten to add. You do things and tell me about them. I don't mean turn purple. I mean, you race. You go to Japan. You live in Victoria, which is a place I've never been. You have squirrels jump in your lap.
And you are things that I am not. You are a lesbian. You are happily married. You are athletic (a state of mind, not body). You are gregarious. Because you are different, you have different perspectives, even on things we both value. And that enriches me.
And you are things that I am. You are female. You are geeky. You are intellectual (again, a disposition, not a statement about intelligence). You can't sleep for 8 hours straight. So sometimes you write things that startle me with how much it is like my own experience.
And you remind me very much of my daughter. I think I've told you this. Both with scary symptoms of inexplicable origin, and with your innate gung-ho spirit. Now, what's not to love there? I dare say that if you needed mom hugs (or dad hugs, or family hugs in general) it would take you all day to get through the hugging line.
Are you disabled? I guess everyone of us who has a variable disorder wonders this. But you seem to be asking if you are past disabled and now something else. Are you still among the living? And the answer is, yes, you are. You are quite human. You are not undead. You are one of us, more than the sum of your parts.
I don't really care why someone's abilities have beco0me limited or whether they are stable or progressive. What matters is the functional impact and you certainly meet that criteria.
I think most people with disabilities have the same understanding and just between you and me (oh, and the entire internet), I think most SCIs (and similarly stable conditions that enable serious particcip[ation in sports) are more able than not. I use a wheelchair, but I have nothing else in common with say, Rick Hansen, Jeff Adams, etc. Their level of ability is so far outside my experience, they might as well be ablebodied.
However, I do think we all have a right to speak to the needs of the disabled community. If we all speak, it contributes to a public identity as a varied and diverse group and helps break down the current stereotypes that lump us all into one group with the same needs, personalities and views.
Been thinking some more about the identity issue. I think we all have more than one identity. I am a woman, I have a disability, I have arthritis, I am of Danish background, etc. Having a disability and having arthritis may overlap, but they're not the same identity. Likewise, I think you have more than one identity. Functionally, you belong in the disabled community, but you also have an identity as someone who has a terminal diagnosis. The two overlap, but they're not the same. Maybe the gap you're feeling, the need that's not being met under the wider umbrella of disability could be addressed by connecting to the community that lives with a terminal diagnosis?
"Maybe I am hiding in this family becuase they do care about me, when honestly, if I cared about them as much as they do about me, I would leave so they could help each other, supporting each other in shared experiences."
I like that the disability community accepts diversity and I want you in it--the abled community does not accept diversity among bodies and ways of thinking, and I don't want to be like that. Yes, there is a certain amount of alone-ness because of our uniqueness, but it's not the same kind of aloneness as among ableds--there's no exclusion of anyone. If you left yourself out of the disabled community, I'd have to leave myself out, using the same reasoning.
I often pass between categories, often pass as abled during the same week others would be surprised to see me up and walking around, and I only recently and don't always use a scooter. I don't *have* to use it, though I also don't *have* to get out.
I've wondered if I get better (which I hope for), what happens to my disability identity? Currently that constitutes much of who I am and how I think about the world. Certainly I would still advocate for those with disabilities, I couldn't lose that part of myself! But it's odd to think about how that will change my interactions; more likely I'd move back into the invisibly disabled category, which is also a difficult space. Sometimes I don't know if I'm disabled or not, either, even as I can't get up to go to the restroom myself. It's an ephemeral, amorphous word. I don't feel like I meet the criteria either, even when I can check off boxes, because I'm not like others with disability. So we can be different together? Maybe "differently disabled" is a more useful term than "differently abled."
Definitely I feel comfortable with you--yours is the blog I'm certain to read every day!
May the needles test be as quick and dreadless as possible and may the doctor who does it be as nice and kind as mine. That's a long day but is there something you can do immediately afterwards that you can look forward to as soon as you're done? Ice cream or a quick trip to a favorite store?
Beth, there is Oscar Pistorius who does not identify as disabled and does nothing to mention other disabled athletes when he speaks, and there is Beth who doesn't have a "traditional" disability but goes out of her way to coax and entice others into Wheelchair Badminton. There is Beth who shares herself online for everyone to see fear and pain and also happiness, and there is Beth who takes time that costs her dearly in pain later to respond to comments.
There is more to being part of a community than fitting into categories. If that was all there is, it'd be a filing system, not a community. I do not fit in as someone who can be defined as disabled, but I consider myself part of the disability community because, well, I AM part of the community, disability identity or not. I am part of the community just like anyone who acknowledges and respects and participates in the community is part of the community. The people who are NOT part of the community and SHOULD go away are those SCIs you met who didn't want to befriend you because your disability is different. They are part of a filing system; you and I are part of a community.
Every community is diverse. If it isn't, it's not a community.
It's 14:45 in Regina, and I'm at work, thinking the best thoughts I can in your direction. I noticed on the noon news that it's cool there today; I hope that helps you a bit - or a lot, actually.
"Scared" is definitely an identity; it's one that far too many people have, especially children. It's one that we shouldn't need, but I can understand your fear today. Needles I can deal with, mostly, but grasshoppers? I'd be backing away slowly, in case they notice me and decide to swarm. Again.
I acknowledge your fear, Beth, and I'm mentally holding your hand for um, courage.
Still here, still caring,
Neil
I worry about divisions when it comes to identity. I understand why it is sometimes easier to explain 'how it is' to people who share some aspects of the 'it' but that excludes so many others. It seems to me that no person experiences something in the same way as anyone else. That if I had the same disability as someone else then I still wouldn't be like them. And that we are all separate and humanity unites us - or at least I wish it would.
I am tired tonight but my thoughts won't shut up. I hope you get something positive from the tests tomorrow. Maybe an answer to a question, maybe something you need.
JX
Another thought provoking post and the comments are equally interesting and perceptive. If you have a chance to let these comments sink in--I know you're dealing with tests and pain and there isn't always time/space to reflect on what happened just the day before--I think you'll see that you most certainly do belong in the disability community and that in our various embodiments of disability, we share much in common and we are also very aware of and accepting of our differences.
are you able bodied? O temporarily able-bodied? No.
Are you in a wheelchair? Do your arms turned funny colors? Do you pass out regularly? Yes.
Seems to me that you're disabled.
Someone here said that you can belong to two groups at once (wasn't that discussed in algebra).
Think of it as "differently abled."
I'm rambling and I don't think I making any sense.
I'm thinking of you, in any case.
SharonMV: I agree, I like the community here! And I do learn a lot about living day to day from the people here.
I can see how with your complex medical condition (to put it mildly), it must seem very......well, I guess I would say, "Why me? Did I knock down Mother Teresa while driving?"
Yes, I am really happy that you come here and share about yourself. I actually feel less alone knowing that there are other complex diseases and disabilities out there.
RachelCreative: Well, that was a better blog post than I did, and I like that, when I can sit and talk normally and my lips aren't blue then am I disabled? But yes, when I go out, I have more medical supplies than most ambulences. But I'm still just me...getting by.
Goldfish: Thanks, I sort of understand, or I understand how that model unifies us TOGETHER - I don't know how the "US" within a society including all people can absorb the required flexability needed BY those conditions. If that makes sense.
Shiva: Glad you are connected again!
THank you for laying out the history of the movement of the social model so clearly and I can see where my current thinking (and error in thinking) lies in that history so I will follow your recommendation and find that reading and get up to speed - cause yeah, cure me!
Neil: thanks for those reminders. I did mention today to Linda, "You know, maybe having a blog at ELIZABETH MCCLUNG.blogspot wasn't the best plan if I was going to want to sort of be anonymous about what I am going through."
Well, thank for the encouraging words, and yeah, you are differently abled (do you taste the full range, or just not have smell?). And your son can go hang with the EDS people (they can show him MANY interesting tricks). I am scared but yeah, it will be over (it is now) and oddly, I have a plan which may be a "lets go to Sask Plan" - do you still not require any waiting like other provinces to aquire treatment?
Tom P: thanks, I think you are part of the journey too! And Thank you for saying it is okay to be Canadian AND speak for yourself AND that might be good for Canada too.
Em: thanks, and thank you for acknowledging that no matter how I try, essentially it is selfish writing but selfish in a way that tries to reach out - or at least be interesting!
Cheryl: Oh, how you knock down all my arguements I have given on how to run away - I guess I don't get to run away at ALL this year. (sorry this week is my "I'm running into the hills to be a hobo week" and has been for many years - just that sort of emotional state of week)
Yanub: that was a really really great response that made me feel a bit like crying and a bit like smiling at the same time. I am glad that I have come through the other side and am human. I am glad that it is our difference AND our similarities which make us friends (for I think of us as such!). I am also thankful for you saying we all question ourselves this way. It is good not to be alone. Besides if the lesbian thing is a problem just figure that I love Linda and EVERYONE loves Linda (at her previous job they called her "Saint Linda" - no joke).
Lene: Yes, it is answering the questions, where are the women with Lupus and Lymes at the paralympics, where are people with CFS/ME getting a voice? So I get that blogging even with a disability that is unusual adds to the voices that say, "We are 1 in 7 and we exist".
What you say about the terminal makes sense and I should try one of those groups maybe for terminal patients if it isn't too depressing (what if they were all like me? What a hoot support group that would be!).
Frida: you articulate so well many of the feelings I have. If I were to be cured tomorrow, who would I be, would I still have this disability identity? I think I would becuase as I said to Linda, "I've now been disabled longer than I did competition in Epee" (while I did sabre and foil, I never competed until I did Epee). And that is still part of me. And what you say about the diversity of the community being one of the strengths is something I like too - so very much. People didn't make me prove myself, even when I was panicked and probably asking not so great or redundant questions - they were patient and helped me when I needed it. And even now, when I have a bad appointment or incident, I reach out to people, people who do not HAVE what I have but who know pain and loss of function and change of career and plans and get the head space.
Veralidaine: good points and I shall accept your chastisement - this is a community, not a filing system and I will work toward helping build that community of which YOU ARE A PART. And I'm a bit like time delayed rubber balls - I always bounce back eventually!
Neil: Thanks - it didn't go as well as I hoped and I am glad Linda was there and I am glad you are all here so I feel less like screaming and beating the walls and more like writing about it!
Judith: Thanks for your thoughts and well wishes and thank you for reminding me of something important to me. I too think as many people with a condition should blog about it becuase as you say, even people with the same condition are different and the public and doctors need to realize that just because textbook says, "will present as X, Y, Z" that just isn't the way things always go, and people with diseases or disabilities seems like all other people I have met - ALL DIFFERENT (not saying we can't be a community, but we aren't clones, I hope not!).
Donimo: thanks for reminding me of what I needed reminding, that it is through diversity that I fit in, or did I get that backwards? And yeah, go acceptance, go learning, go understanding about people and what they face and how they face it.
First off, I feel totally comfortable around you. I am the type of person who cares and doesn't get mushy, I can go into 'helpful' mode which is why I'm always suggesting things to you. Although it may look like it sometimes, I'm not in denial about your prognosis, I am just interested in doing my best to help you alleviate whatever you're experinecing at that moment.
I think a disabled person can feel a sense of isolation when we don't fit the model and therefore other people don't know what to do with us.
Contrary to what text books tell you about Spina Bifida, I have always had an above average reading age, I'm highly capable of abstract thought (I'd even say it's a talent). I'm only numb on two small places on my body and hyper-sensitive to touch elsewhere.
On the other hand nobody thought to write about the way SB fucks with your hearing, sight (colours can be really *vidid* some days for me!) and other senses in the way I described in my BADD blog. And why didn't they write this? In 1973 this was not the 'model' and it seems nobody has thought to update the data.
I was also quite surprised (read highly perturbed!) to learn that fine motorskills can deteriorate in adults with Spina Bifida. So, taking 10 minutes to lace my shoes is normal? Thanks for telling me!
I think the bottom line is, you are who you are on that day with that number of 'spoons' and other people will just have to get their heads around it. They're not worth aggrivating your condition to fit in with.
Just saw this - it's May 22...
I wouldn't hold my breath for quick access here in Sask. We keep hearing that we have some of the longest waiting lists in the country.
On the other hand, you CAN'T get worse treatment here than in Victoria. At least I hope not!
And since we live a block from one emergency ward, it could be convenient for Linda if you end up in our neighbourhood for a hospital stay. We're really quite cluttered, and not very accessible in the house, I'm afraid. But you're both welcome to stay as necessary.
Tom P: While there are 30 million Canadians, that's the total population. We're not all disabled, unless our current Federal government counts as a disability.
Oh, that's a liability. Not the same thing at all, is it? :)
I'm not sure whether I can taste "normally" or not. I have no other point of reference. I was told that if I can tell the difference between pork and beef, then I can smell, but it's a reduced sense of smell. Well, I can tell the difference, but it's usually a textural difference, and my wife fooled me once. I was able to tell the difference between chocolate and vanilla pudding while blindfolded, if that helps.
Coffee is a vile drink, to me. It's mostly a smell thing, my wife says. I like cherries, but I have no idea if they taste the same to me as they do to you. I enjoy sausages, bacon, and tea (though I use sugar in tea to improve it even herbal teas). Rice used to be a tasteless mush until we discovered Basmati rice, but rice mush is different to oatmeal's mushy taste.
As for my flexible son, he'd be more akin to the Aspergers group than EDS. He was supposed to be tested for Aspergers 5 years ago, but an argument as to whether the school or health system would pay for it meant it never happened. We didn't mind; he's doing fine the way he is. Ignorance might be bliss, in this case.
"While there are 30 million Canadians, that's the total population."
I did, in fact, know that so I will use as explanation the fact that I rarely think before I write.
'"While there are 30 million Canadians, that's the total population."
I did, in fact, know that so I will use as explanation the fact that I rarely think before I write.'
Oh, I'm with you there, friend. And on the rare occasions that I do think, there's usually some dumb-ass typo in the middle of it all, showing off my over-eagerness to get it posted.
Seriously, I am way behind in reading this, but I don't really care what category you apply to yourself from minute to minute; you're still my friend and my honorary niece until you decide you don't want to be, or until you start eating kittens or doing something equally unforgivable.
I don't think of myself as disabled, either, though I do admit to being ill, and quite different in a lot of ways. Odd even.
However, I remember someone posted a BADD '07 entry in which he explained that he was not "differently abled," that "differently abled" meant being able to do things like juggle. Most people can't juggle, so a person who can is "differently abled."
I wish I could remember who wrote that.
Post a Comment