Archive for the ‘social model’ Tag

Disabled Animals   Leave a comment

Luther has a brown bum; both are brown and white Abyssinians.I have four guinea pigs right now, and two of them are rescues – surrendered by their owners due to allergies. One of these guinea pigs, Luther, has some chronic health concerns:

  • he has to be checked daily to ensure that he’s not impacted (kind of like being constipated, but at the point of expression rather than up in the intestines, and I get to clean him out if he is);
  • he seems to have some scarring on his lungs that makes it difficult for him to breathe;
  • due to his breathing difficulties he sometimes has trouble cleaning himself properly, which results in the cleaning fluid guinea pigs secrete in their eyes to spill all over the fur around his eyes and drying there; and
  • his grease gland needs to be checked to ensure that it’s not in danger of becoming infected.

Luther lives with his brother, George, in a nice big cage. They live happy guinea pig lives, eating veggies and pellets and hay and grass, and sleeping and chasing each other around the cage.

Luther’s health concerns are, as I said, chronic, which means that they aren’t going to get better. He will always have these conditions, and will always require the extra care I provide. George and Luther are also both five years old, so they are considered elderly; my job is to keep them comfortable and happy until that’s not possible anymore.

Flame is a tortoiseshell tabby, or torbie.Along with the guinea pigs, we have a cat, Flame, who is seven  years old. Flame was abused when she was younger and spent two years living in a home where the other cats hated her. When she came to us, she had licked all of the fur off her tummy and rear legs, as well as most of her front legs and part of her tail. She was eating a food for cats with allergies.

We aren’t sure if she really has allergies, because the “lick until there is no more fur” behaviour is common in cats who have allergies but also in cats who are incredibly stressed. Now that she is in a less stressful environment, her fur is growing back. Once her tummy has filled in we will take her to the vet and start working to find out if she is really allergic to some kind of food or if it was all just due to stress.

She is also very needy and wants to snuggle with anyone who has a lap. Her purr could shake the house!

Chronic conditions like those George has and the one Flame has can be disabling. But with appropriate care (checking Luther’s bum every day) and accommodations (Flame’s special diet, a less stressful environment) some of the effects can be ameliorated. That doesn’t mean they stop having these conditions, it just means their lives are happy ones and they can do the things they need/want to do without so much difficulty.

Acceptance III   Leave a comment

As promised, I’m going to talk about the treatability of ADHD.

Russell Barkley says that ADHD is the most treatable mental disorder. He’s sort of right, but there are problems with that statement. There are actually problems with the concept of treatment as it currently stands.

So let’s look at the concept of treatment and then we can talk about whether or not ADHD is actually treatable.

Society has taught us that it is best to be neurotypical. We should be neurotypical, we should live our lives as though we are neurotypical, and any difficulty we have achieving that goal is a failure. Treatment is meant to bring us “back to normal” – that is, it’s supposed to make us more neurotypical, so that we can live like neurotypicals and have a better quality of life and be happy. Because the assumption is that you can only be happy if you are neurotypical, and your quality of life must be horrible if you aren’t living the same way as neurotypical people do.

There are so many things wrong with this that I don’t really know where to begin.

Let’s start with the assumption that you have to be neurotypical to be happy and to have a good quality of life.

I know lots of people who have mental disorders and developmental disabilities that affect their cognitive functioning, and most of them are happy and have good quality of life. Obviously neurotypicality is not necessary for either happiness or quality of life.

So if that assumption is incorrect, then it must also not be true that we need to live like we’re neurotypical in order to be successful, to be happy, and to have a good quality of life. Which means that treatment in order to be “more normal” is ableist and unnecessary.

Now, that doesn’t mean that treatment itself is unnecessary. If a condition is causing difficulty in an area that really matters to you, and you want help with that area and there is something out there that can help, treatment is a great thing. But the goal of treatment should never be “change my brain and my life so that I am neurotypical,” because not only is that impossible, it’s ableist and an incredibly negative way to approach something that is so pervasive and intrinsic to your life and your identity.

So that’s why the current concept of treatment is a bad one. And I know this is what people think, because I get questions from people all the time asking why they still have trouble with particular things even though they’re taking medication. I get questions asking if medication is going to change their personality. And I get these questions because people are told that medication is the most effective form of treatment for ADHD, and they think that “treatment” means “no more ADHD,” and that’s just plain wrong.

So how treatable is ADHD, really?

Well, in the current concept of treatment (as sort of a cure), it’s not treatable at all. There are no treatments out there that will make a person suddenly have a neurotypical brain. The best medication can do is make it so that our brains function more like they’re neurotypical, so it’s easier to do certain things while it’s in our system, but it doesn’t actually make us neurotypical, and we still have to work at things that neurotypicals find easy.

There are a lot of treatments for ADHD. I’ve listed a lot of them here:

Medication – This is the first-run option. A lot of people never get past this component of a treatment plan, and that’s not great because you need to be prepared if you have to stop taking medication for some reason.

Diet – A good diet that has lots of protein (not like ridiculously high, just higher than average) is important for good brain function. Other important components here include Omega-3 fatty acids (found in eggs and fish, for the most part) and plenty of vegetables, as well as complex carbohydrates (e.g., whole wheat bread and pasta, beans, potatoes).

Exercise – Regular exercise (especially cardio) is amazingly good for your brain! It wakes up your entire body and keeps dopamine in your system, which is great since dopamine is one of the primary neurotransmitters involved in ADHD.

Sleep – When we sleep, our bodies do a bunch of things like healing and rejuvenating. Our brains do that, but they also work through all of the events of the day, committing things to long-term memory and stuff like that. We need to make sure we’re getting at least eight hours of sleep per night to make sure our brains are functioning at their best.

Supplements – Krill oil (or other fish oil), rhodiola, reishi, and other supplements listed here (my father-in-law’s business) can be helpful in promoting optimum functioning. Dr Amen also has some suggestions in his book Healing ADHD.

ADHD Coaching – ADHD coaches help you learn, develop, and implement strategies that work for you, so that you can better manage your ADHD symptoms and be able to do well if you have to stop taking medication.

Talk Therapy – Sometimes you have a lot of stuff you need to work through, so this can be very helpful, whether you see a counselor, psychologist, or psychiatrist.

Cognitive Behavioural Therapy (CBT) – This is a type of behavioural therapy where the practitioner (a psychologist or social worker with training in CBT) helps you think through your behaviours and come up with better ways to react to different situations.

Meditation – If you’re able to meditate, this can be really helpful in getting your mind centred and teaching your brain to actually concentrate or focus on what you want it to.

Mindfulness – This is something I’ve been hearing more about lately, and it seems to be about getting us to focus on the actual now and the immediate future, rather than dwelling on the past or thinking really far into the future. Being truly present in the moment instead of jumping ahead in conversations or tuning out because something else caught our attention.

That’s rather a lot. And not one of these things is going to make you neurotypical.

But I don’t think that’s necessarily a bad thing.

Why should we try to live like we’re neurotypical, when we aren’t? Rather, shouldn’t we be working towards living the best life we can, as people who have ADHD? Yes, some of my symptoms cause me distress and those need to be managed somehow, but other than that does it really matter that my mind makes random connections, that I lose track of time, that I hyperfocus on silly little things?

My life has a number of qualities that are the same as the life of a neurotypical. There are also lots of things about my life that are different and are probably kind of strange. And, of course, there are things about my life and about how my brain works that cause disasters, but there are also things about both of those things that are amazing and wonderful, and I don’t see why the presence of disasters should automatically mean that my life or my brain is wrong, that I shouldn’t be how or who I am.

I am a person. I have ADHD. I am valuable as I am, regardless of how “neurotypical” I make myself seem. And that’s okay. I don’t have to be neurotypical to be worthy of respect, of attention, of achieving success on my own terms.

Society doesn’t determine those things about me. I do.

This is part three of a series. I don’t know how long the series will be or when I’ll post the next installment. I’m not sure what I’ll talk about next. I just don’t think I’m quite finished talking about this yet.

Disability vs Impairment: My thoughts.   4 comments

Yesterday I shared this link on Facebook with this comment:

This is a good article. I’m rather iffy on the bit in the middle where she talks about “impairment” being the bit you can’t do no matter what and “disability” being the thing society imposes upon you, because I sure as heck don’t feel “impaired” when executive dysfunction kicks in. 😛

So I was asked how I define “impairment.” Here’s my answer:

The word “impaired” implies that things are not as serious. The distinction she says the social model makes between being “disabled” by society (having ability taken away by something external to oneself) and being “impaired” regardless is cosmetic at best.

When I really want to do something and never get to it because my ADHD decided I should hyperfocus on something completely different (and usually fairly useless), that’s not an “impairment”; it’s an inability to do something I would like to do. That’s a disability. And it’s within, not without.

I feel like sometimes these distinctions are made by people with physical/acquired disabilities and they have forgotten about those of us who don’t fit that profile.

Having said that, I don’t like person-first language either and I am frustrated that the name of my disorder doesn’t lend itself well to identity-first language.

Someone else has now talked about what impairment means and so on, and how “disability” is about social and “impairment” is about objective difficulties with things. But their examples are, again, all about physical disabilities. My response:

Except there aren’t always accommodations that will help. A lot of mental disabilities can’t be accommodated. It seems that the biggest thing for something like what I deal with is often “change your expectations” or “be okay with not being able to do the same stuff as well as you did yesterday” and stuff like that. That’s not an accommodation at all; it’s not allowing me to still get things done (both things I need to do and things I want to do), it’s expecting me to just change my attitude. And that’s not always possible. (Adjusting my attitude has resulted in much better self-esteem and I am much more able to deal with life when ADHD derails my day, but it isn’t an accommodation because it’s not making it so my day stays on track.)

The kinds of accommodations I need from society also aren’t exactly things that you can expect anyone to give. Flexible appointment times for doctors and dentists and so on? It is to laugh. (And by flexible I don’t mean “pick from these available times,” I mean “it’s no big deal if you’re half an hour late because your ADHD is a pain in the butt.”)

And this is the frustration with the social model of disability, and the frustration with the terminology of “impairment” vs “disability.” I don’t experience these things as “impairment”; I experience them as “disability.” As in “I have a lack of ability in this area.” And it’s not something that can be fixed.

I know I’m probably shouting into the wind here. I like the social-relational model of disability a lot, but I don’t like replacing the word “disability” with “impairment” because it implies that it’s not as severe. It implies that if society doesn’t expect my brain to function just like non-ADHD brains, and makes allowances for that and accommodates the difficulties I have because of it, then I am somehow not as disabled/impaired by my ADHD. Like removing stigma and discrimination magically makes my ADHD easier to live with.

It doesn’t work that way.

I know it doesn’t work that way because I have bent and twisted my life as much as possible to accommodate my ADHD, and I am still disabled. I have friends and family who accommodate my difficulties and accept me just as I am, and I am still disabled.

I will always be disabled, even if I wake up tomorrow and everyone believes in and accommodates ADHD.

That’s just how it is.

Accepting disabilities   Leave a comment

Lots is going on right now.

This month is Autism Awareness Month in the US, which means that it’s become Autism Awareness Month all over the world, because heaven forbid other countries choose different months (did you know that Canada’s Autism Awareness Month is actually in October?); today, April 2, is World Autism Awareness Day.

The online autistic community [a group in which I am including allistic – non-autistic – allies] has rallied around Amanda Baggs, a prominent autistic activist, because she is in the hospital and the medical staff had been trying to convince her she shouldn’t get a feeding tube – something she needs because she’s been aspirating so much that without the tube she will probably die sooner than later. The campaign of e-mails and phone calls worked, and she is receiving the tube today.

Lots of other people have written about how the kind of awareness that is promoted by days and months like this leads to situations like Amanda’s. The wider autistic community has chosen to reject the idea of “awareness” and instead promote acceptance of autism.

Disabled people are devalued in our society. The attitude that Amanda has been dealing with is far too common. Expectant parents are routinely pressured to abort fetuses if prenatal testing shows any kind of abnormality (and babies born with disorders like severe apoxia are neglected, on the doctors’ orders). People’s medical needs are ignored because they have mental or developmental disorders. People are encouraged to seek their own deaths, to relieve the pressure on their caregivers. Supposed caregivers (including staff, who are paid to support individuals with disabilities) get away with systematic abuse (of every kind). And supposed caregivers (all too often, parents) are given light sentences after they murder the disabled people they’re supposed to be caring for, because it is so stressful to do so.

Note that the links in that paragraph are for more than one country.

We shouldn’t have to justify our existence.

Every day, I read things from people that basically say “I may be disabled, but I [do all of these things] so I deserve to exist.” The worse ones go so far as to say “At least I’m not [X].” (Where X is a “more severe” disability.) We shouldn’t have to say these things, but we do, because if we can’t prove that we’re worthy of respect and rights and all that other stuff non-disabled people never have to think about, well… people die.

I find it demeaning that I have to point out all of the ways in which ADHD disables me, in order to get people to accept that this condition is real and damaging, and then turn around and point out all of the ways in which I am successful, in order to get these same people to recognize that I am a human being. I don’t want pity, I want understanding and acceptance.

Let’s talk about acceptance for a while, shall we? So many people think that “acceptance” means “stop trying.” I don’t know how to tackle that, so I’m not even going to try. Instead, I’m going to describe what acceptance really means.

Acceptance means meeting people where they are at, right now. It means seeing the person as a whole, not just a small part of them. It means finding out what is important to them, what they want to achieve in life, and what kind of help they might need to get there. It means understanding that people’s differences are important and valuable. It means learning what is hindering people from living the lives they want to live, and working to help them have their lives as they want them. It means quality of life, it means success on their terms (not society’s terms), and it means respecting people.

Promoting acceptance automatically promotes awareness. The more we accept people for themselves, as they are; the more we respect others simply because they are human beings; the more we refuse to be afraid of showing our unique traits to the world… the more the world becomes aware of us, our needs, and our humanity.

I want to write about this more. (October 4, 2012, Tumblr)   1 comment

I posted this as part of a reblog of this post.

I think that a lot of these books (and the professionals we go to for help) don’t give us enough credit. I want to learn something new when I read one of these books, not have all the same old stuff tossed at me yet again. If that same old stuff worked, I wouldn’t be reading yet another book, now, would I?

And I think part of the problem is that they’re approaching the problems we have from the point of view that we need to find ways to make our lives function the way others’ lives function.

That makes absolutely no sense.

Aside from the need to be places on time (like work) and keep a job, why does everything about my life need to look and function the same way a non-ADHDer’s life does?

The answer is: it doesn’t. It really, really doesn’t.

Figuring that out has really opened up my eyes and given me a lot more positive outlook. Finding ways to force life to bend to my brain (instead of the other way around) has been challenging, and I haven’t quite succeeded yet. I still do a LOT of brain-wrangling (read the post I made last night to see how bad it can be). But I have far more successful days than I did when I was trying to make myself fit into a set of expectations that were unrealistic and didn’t make sense given my particular neurology. And while I do think that being able to stay home has had a big impact on that, I don’t think it was vital; since figuring this out, I’ve had plenty of successful days while working full-time (in an administrative position), as well.

I think that we are capable of figuring out how to bend life to suit our brains and still fit into society’s general expectations of “success” and “adult”; we’ve just been taught to think otherwise, because there’s an entire industry that hinges on our need for assistance. I think we can help each other in this pursuit, and we don’t have to spend anything to do that except our internet fees, which we would be paying anyway.

I want to talk about this some more. Because it’s something I only just found the words for today, so now I want to keep adding more words.

I want to talk about how I’m a “strong person.” I lived for 28 years without knowing I had ADHD, and even though I couldn’t figure out how to adult, I somehow managed to achieve “success.”

I want to talk about how I don’t feel strong a lot of the time, and how I spit out the phrase like it’s poison, because it’s something I feel I have to be, not something I want to be or even really am.

I want to talk about how I’m a “successful person.” I have a university degree and completed the coursework for a second, and I worked full-time (or something resembling it) for nearly a decade.

I want to talk about how I have never really felt successful, and how I never feel like I deserve the praise I receive from people for the things I do, even though I know that I do those things well and worked hard to do a good job.

I want to talk about how there’s this thing that happens with some disabilities, where the people who have them are expected to just try harder and be like everyone else. We’re expected to learn to pretend that we aren’t the way we are, and there’s an assumption that this pretending won’t naturally take energy and impact our lives in a negative way.

I want to talk about the other thing that happens, where people refuse to claim the word “disability” and insist that they’re just “different.” I want to talk about the disservice this does to those who are truly disabled by the same thing. I want to talk about how this doesn’t help people who don’t have the disability understand what it is and how it affects us.

I want to talk about how focusing on ability is damaging, too, because there are people who struggle with everything, and people who can’t even begin that struggle, and those people are still valuable as people. And because people change over time, and they learn new things, so condemning someone to inability due to how they present as a child is just as bad as expecting someone to do more than they are currently able to do because they did it before so it’s something they can always do.

I want to talk about how the medical model of disability is awful because it assumes that disability is automatically “bad” and needs to be eradicated. I want to talk about how the social model of disability isn’t much better because it assumes that people are really only disabled due to the expectations society has of us.

I want to talk about how everybody is different, and how that means that the solution to a problem that worked for one person isn’t necessarily going to work for the next person, even if they have the exact same diagnosis. Even if they take the exact same medication at the exact same dose.

I want to talk about how changing my environment and my life situation to better suit my brain hasn’t cured my ADHD. About how all those “experts” who say that ADHDers find it easier to focus on things they enjoy and things they’re interested in are full of shit. About how hard I’m working to get my house in order, because I want it to be comfortable and I want to be able to redecorate and I want to be able to finally organize our books and things like that. About how much I hate my medication right now because it’s making me miserable physically due to indigestion, but I can’t stop taking it or I’ll eat everything in the house and regain all the weight I’ve worked so hard to lose over the last few years.

I want to talk about how disability isn’t “bad,” it just is. Like emotions. Emotions aren’t “bad” or “good,” they just are; it’s what you do with them that matters. Disability exists. People legitimately can’t do things because they are disabled. That isn’t a bad thing, unless the things they can’t do are things they want to do for themselves. And that’s when amazing things are invented. That’s how amazing things happen, how great ideas are born, how movements gain momentum.

I want to talk about how we’re encouraged to go to these professionals, and to read books by “experts.” How this is all geared toward “helping” us act like we aren’t disabled, like there isn’t this thing about us that makes us different, that makes it so certain things are incredibly difficult and others are truly impossible. How people who have our disability and achieved “success” are held up as amazing examples we should try to emulate. How those people are sometimes framed as having achieved what they have “in spite of” their disabilities and sometimes framed as having achieved what they have “because of” their disabilities, and that is really confusing and unhelpful for everyone.

I want to talk about all of these things, and probably more.

I might reblog this and expand on some of these points later on. In the meantime, here it is for everyone else to read and respond to, if you like.