Archive for the ‘Identity’ Category

Pockets of Organization   Leave a comment

Part of my ADHD is clutter, to a degree that much of my life is messy. Things are just all over the place. If I do get some things into a box, they’re rarely organized or sorted out before they go into the box; they’re just tossed there to get them out the way.

But there are pockets of organization in my life, and I cherish these pockets and hold onto them tightly. Sometimes they’re what keep me anchored when everything else is slipping out of reach.

My kitchen, for example, is always organized. Even though clutter invariably seeps into the room via the counters and the table and chairs, my cupboards and fridge are well-organized and I do have a plan and a process that I follow to get things re-organized.

But there are smaller pockets around the house. My diaper-changing stations are well-organized. I keep them stocked with wipes and diaper cream and diaper pins and Snappis and diaper covers. My dresser drawers are organized — as are my husband’s dresser drawers and my son’s dresser drawers. I have a really well-organized to-do list system in place that works really well for me. My house plants are arranged in a particular order on the table in the large picture window in the living room.

I think that it’s important to look for ability, to notice when there are things I do well, especially when those pockets of ability occur in the midst of (and within the context of) something I have difficulty with due to my disability. But it’s equally important that I be the one to realize it. It’s okay for someone else to compliment me on my organized kitchen, but I’m the one who has to be able to accept that pocket of organization as proof that I really am good at organizing stuff; my chaos is due to a breakdown at a different point in the chain. This knowledge is helpful when anxiety or depression set in. I am good at some stuff and I struggle with other stuff. Same as everyone else on the planet.

It’s just that the stuff I have trouble with is different from what everyone else has trouble with — if not in terms of the specific thing, then at least in terms of degree of difficulty.

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Posted August 27, 2015 by karalianne in Identity

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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.

Acceptance II   Leave a comment

My self-esteem has gotten a lot better since I was diagnosed with ADHD. I no longer had to wonder why I was so different from other people, and I finally knew where to look for help with the things that caused me the most trouble in my life. Medication helped manage my symptoms and made it easier for me to learn and implement strategies to help me live my life on my own terms, and those strategies have been amazing for my overall quality of life. But mostly just knowing what the heck was going on was a huge relief.

Labels are not bad. We use them all the time. Every noun is a label, after all. Book, chair, table, car: all labels. Dog, cat, guinea pig, human: labels. John, Sally, Marie, David: again, labels. So this “I don’t believe in labels” that I see from presumably neurotypical people is ridiculous. You do believe in labels, you just don’t like categorizing people by their neurology or perceived brokenness.

Here’s something you maybe haven’t considered: I’m not broken. I have ADHD, and that does not mean that I am worth less than you in any way, shape, or form. I may have difficulties with things that you don’t have difficulty with, but I suspect that I am very good at things that you do have trouble with. Because I am a person, and there are lots of labels that apply to me besides ADHD. For example: I am a woman, I am a wife, I am a writer, I am an editor, I am occasionally an artist, I am a Christian, I am an Anglican, I am a guinea pig mom and a kitty mom, I attempt to be a housewife, I am sometimes a seamstress, I am a cook, and I am an ADHDer. I am also a brunette, I am tall, I am overweight, I am strong, I am enthusiastic, I am silly, I am serious, I am happy, I am a musician, I am good with computers, and I am an adult.

I work very hard every day to do the things that I want to accomplish. It’s not easy because having ADHD means that my executive functioning isn’t very good. But I work at it because it matters to me and because this is something I want to become good at, if possible. I don’t work so hard at this because I want to be neurotypical. I don’t do it so that my life will be more like yours. I don’t even try to do things the way non-ADHDers do them. I’m just living my life, trying to accomplish the things I choose to focus on, in the way that makes sense for me. Sometimes how I do these things is very different from how other people do them. Since it’s the results that matter, not the method, I don’t worry about that… and you shouldn’t worry about it either. As long as the dishes are clean, does it really matter that I wash them in the morning instead of after dinner every evening? Probably not. So I do it the way that works for me.

It took time for me to get to this point. I spent the first 28-30 years of my life trying to make my life what I thought everyone else’s lives were like. You know what you get when you do that? Depression. Anxiety. It’s not a satisfying existence. You’re forever struggling to achieve something that not only isn’t really something anyone does, it’s something that you in particular cannot accomplish due to your neurology. When I was diagnosed with ADHD at 28, I started to figure this out. And it’s only in the last few years that I really began to embrace it.

I have expectations of myself, but they are far more realistic and they take into account the things I struggle with when it comes to getting stuff done. I try not to beat myself up over things I don’t achieve in a given day, because there’s always tomorrow and I can try again and maybe do better then. Things are no longer life or death for me. I have deadlines for work, but it’s a lot easier to meet those deadlines when I’m not also stressing over how many other things I need to accomplish because if I don’t my life is going to fall apart (even though it won’t).

When I tell you that I have ADHD and you respond with “I don’t believe in labels,” you are telling me that you don’t actually care about the challenges I face. You are telling me that you will not be understanding when things get buggered up because ADHD is unpredictable. You are telling me that you are not a safe person for me to be around, because you do not understand the importance of this label to me and my life.

Because ADHD is important. It’s not separable from my identity, because it’s been present since I was a very small child (possibly since birth). It has affected (and continues to affect) how I perceive and interact with the world. I can’t pretend it doesn’t exist, and I don’t want to, either. I want the world to stop pretending it doesn’t exist. I want the world to stop acting like labels are bad. I want the world to stop making labels bad by treating us differently if we have one of these “negative” ones. I want the world to stop caring about how we do things and start caring about what things we do.

I think that it is horrible that there are people who have ADHD and autism and other neurological and mental disorders who are made to feel like they are broken or “less than” simply because they are different.

I am not neurotypical. I have ADHD. I am not broken. I am exactly who I am supposed to be, and I think that is amazing.

This is part two of a series. I’m not sure when the third part will be posted. It will probably be about how “treatable” ADHD is, unless something else catches my attention between now and then.

What’s in a Label?   Leave a comment

I have a cold, but here is me reading my poem. It’s just a first draft but the poem is supposed to be spoken word, so I recorded it. The words of the poem are reproduced after the Soundcloud widget for the benefit of anyone who needs them.

I hope you like it. I hope you learn something. I hope you feel validated. I hope it speaks to you.

What’s in a Label?

I. Identity

This one time someone said
“I don’t believe in labels”
when I told them I have ADHD.
     I said nothing.
     But I wanted to.
I wanted to ask how they describe themselves.
Sexual orientation, gender, hair colour, career, height, weight,
Name.

II. Condescension

This one time my doctor said
“you’ve gone this long without treatment, you can wait a little longer”
when I came in with the file that held my testing results.
     I said nothing.
     But I wanted to.
I wanted to ask if he’d ever been at the end of his ability to cope.
If he’d ever called his mother crying because he’d just spent four hours organizing his books
instead of cleaning his apartment.

III. Disbelief

This one time a relative said
“ADHD is made up by the drug companies to get children addicted to drugs”
when I was driving them somewhere.
     I said nothing.
     But I wanted to.
I wanted to point out
that appropriate treatment in childhood lessens the likelihood of drug abuse.
And that I was taking those self-same drugs so I could function like other people.

This other time someone said
“everyone loses things or is late or gets absorbed in activities”
when I mentioned I had ADHD.
     And this time
     I said something.
I said that everyone does those things,
but not every day.
Not multiple times a day
     every day
     for their entire life.
I invite you to live with my brain for just a day
and then try and tell me ADHD doesn’t exist.

IV. Jokes

Too many times I hear
“Look, a squirrel!” or “Wanna go ride bikes?”
like it’s a punch line to a hilarious joke about my attention span.
     I often say nothing.
     But I want to.
I want to point out that most ADHDers can hyperfocus on stuff longer than non-ADHDers
depending on the circumstances, the topic, the activity…
we just can’t always choose what we focus on.

And then there are people who say
“I had an ADD moment”
when they forgot something for a moment or did something silly.
     I usually say nothing.
     But I want to.
I want to point out that ADHD is a neurological disorder
and if you don’t have that neurology
it’s impossible for you to have “an ADD moment.”

My disorder is not for you to joke about.
You know how when you’re a kid and someone picks on your kid brother
     and you yell at them that
     “nobody’s allowed to hurt my brother except me!”
You know how that is?
That’s what ADHD is like.
My kid brother.
Leave it alone.

V. Excuses

Sometimes I hear people complaining about ADHD
“they just use it as an excuse to be lazy!”
and other things like that.
     I’m learning to say something.
     Because it needs to be said.
It needs to be said that ADHD is a disorder,
that it’s distressing and difficult and invisible and it can look like so many moral failings,
but that’s not what it is and you
are
hurting
us
when you say things like that.

VI. Disability

So many people try to cushion ADHD
“it’s a difference not a disability”
they say, and feel proud for enhancing our self-esteem.
     I speak about this more and more.
     Because it needs to be said.
It needs to be said that disability is not a bad word, not an insult,
not demeaning:
it’s just a word.
And saying that ADHD is just a difference
hurts our ability to get accommodations
and can damage our self-esteem,
not help it.

VII. Reality

My daily to-do list has over 30 tasks on it,
     and that includes eating lunch
     because I forget to eat sometimes
     and because food is hard when it’s just me I’m feeding.
Most days I manage about 10 or so tasks.
     The other day I did over 20 and I was so excited that I’d accomplished so much
I nearly cried.
I have to write everything down or I forget the details.
I have to ask a lot of questions or I miss the point.
I have to take time to think about things or I don’t understand.
I have spent days locked into Facebook or Tumblr,
     refreshing the screen over and over
     even though I know there’s nothing new to look at
     and I need to do the dishes,
     or I want to read a book,
     or I need to start dinner.
I’m not lazy.
I put in more effort to work through the steps to the simplest tasks
     to remember what I came into the kitchen for
     to recall what I was talking about when I forget in the middle of a word
     to laugh at my mistakes when they’re funny,
     to apologize when they’re not.
I put in more effort for all of these things
than probably anyone else
(except other ADHDers).
My successes cost me more than they cost you.

ADHD is a part of who I am
     it is neutral
     it is annoying
     it is fun
     it is exciting
     it is devastating
     it is pervasive.
I don’t know who I would be without ADHD.
It colours my perceptions
     my interactions
     my life.
It’s not a gift —
     some days there is nothing good about life with ADHD.
It’s not just a difference —
     I’ve accommodated it as much as possible and it’s still disabling.
But it’s a part of me.

So what’s in a label?
A label in isolation doesn’t define me
but pull them all together
stuff them into a box
and that box is me.

Ninth Anniversary   Leave a comment

Nine years ago today I was diagnosed with ADHD. The test results said severe Combined Type, but I find that I resonate more with descriptions of what it’s like to be Inattentive Type, so I go with that one. (It’s also the one I get when I do quizzes in ADHD books.)

I was going to tell my diagnosis story, but I think instead I’ll tell you about my life now, nine years after diagnosis. Maybe next year I’ll talk about where I was, but this year I want to talk about where I am.

I am married. We’ll celebrate our fourth wedding anniversary this July, and in October it will be seven years since we met.

I am a housewife. I’m still working on being good at this role, but I’m getting there. Slowly. And it makes me glad.

I am a published author. I had a non-fiction article published in a local magazine (local to Calgary) in 2007 and a short story published in an anthology in 2013.

I am a copyeditor. I’m still working on advertising and getting more clients, but I do this part-time from home and I’m glad I can do it.

I am unmedicated. I have systems in place that help me manage my life, and they work pretty well most of the time. I’ve learned to accept the days when stuff doesn’t pan out and to tweak the system when it becomes obvious that there are bits that just aren’t working for me anymore. (If it becomes apparent that I can’t manage without medication anymore, I will go back to my doctor.)

I am content. Sometimes I’m not so content, but most of the time I like myself as I am, I like where I am in my life, and I am happy with things as they are.

I am disabled. Sure, I have more good days than bad lately, but I’m still severely impaired by ADHD. I struggle with all the same things I’ve always struggled with, from memory to organization to executive function to anxiety to depression to sleep to productivity to procrastination to frustration to perfectionism… the list goes on and on. I still have trouble with timeliness, and I have interesting social moments from time to time.

There’s probably more I could say about where I currently am in my life: things about my spiritual life and my relationships and so on. But these are the things that feel most relevant to my ADHD and the fact that it’s been nine years since I was diagnosed. These are all things that are different about me since my diagnosis (except that last one; I’ve always been disabled). These are all things that have changed because I got diagnosed and got appropriate treatment (which has included counseling, medication, and ADHD coaching at different times, sometimes overlapping).

Other things that have changed for the better: I’m more confident; I don’t feel like I’m barely managing to hold it together anymore; sometimes I actually feel like I have achieved success in my life; and I feel more certain of what I want out of life.

I always had ADHD; the only thing my diagnosis really did was make treatment accessible and give me a place to look for ideas that might help me deal more effectively with my difficulties.

Posted February 12, 2014 by karalianne in Identity

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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.

Disability and Identity   Leave a comment

I don’t understand why people want to police what we call ourselves.

I have ADHD. When I’m speaking to people, I usually say “I’m ADD.” When I’m writing about people who have ADHD, I talk about “ADHDers.”

Yes, I am more than my ADHD. I am more than my executive dysfunction.

But it is an intrinsic part of who I am, because it’s helped shape me into the person I am and it continues to influence my life in a myriad of ways.

I mean, I am also a Christian, a cis woman, taller-than-average (I’m 5’9”; the average height for a cis woman in North America is 5’6”), overweight, a brunette, creative, organized, a reader, a writer, an editor, and a nerd. I have tinnitus, visual snow, hyperacusis, and misophonia, and I wear glasses. I’m a housewife.

Some of these descriptors are things I chose; others are not. Why is it okay to say that “I am” some of these things but not okay to say that “I am” other of these things? Saying that I’m a brunette doesn’t define me any more than saying that I have brown hair does. So why does it matter whether I say that I “am” ADHD, that I “have” ADHD, or that I’m an ADHDer?

Thinking positively about disability doesn’t mean rejecting the fact that there are difficulties (extreme difficulties, or it wouldn’t be a disability) inherent to the condition.

I take medication and I advocate at least trying it because it can help people deal with their executive dysfunction long enough to actually learn skills they need in order to manage without it (at least for a little while). Medication makes a lot of things about my life much easier. I still struggle with my symptoms, but it’s easier to deal when I’m on my meds.

But ADHD is and will always be a part of who I am; I can’t escape it, and I don’t want to. Sure, it would be nice to not have to deal with executive dysfunction on a daily basis, but I have absolutely no idea who I would be if I didn’t have ADHD. I don’t know how I would relate to the world if it suddenly disappeared from my life. I don’t know what I would have grown up to be like if I didn’t have ADHD. And while I’m sure there’s an alternate universe in which I don’t have ADHD, I seriously doubt I’ll ever meet that version of myself. And that’s okay.

I choose to identify myself as being ADHD, as being an ADHDer. I choose to struggle through my difficulties. I choose to medicate while I work on learning skills I need to manage my life and my home. I choose to keep ADHD a part of myself, a part of my identity, a part of how I relate to the world. ADHD causes me plenty of difficulties (else I wouldn’t have been diagnosed with it), and I am hard pressed to know which of my talents and gifts are a result of my ADHD. So I choose to think of it as a neutral aspect of myself. Sometimes it’s a pain in the ass, just like my height can be. Sometimes it’s a lot of fun, just like my creativity can be.

Because thinking differently about disability doesn’t mean only seeing it in a positive light. Thinking positively about disability doesn’t mean ignoring the difficulties.

It just means accepting it and understanding it, and learning to incorporate it into your life – however you may choose to do that.

(That last paragraph means that if you don’t want to make your disability part of your identity the way I have, that’s okay. It’s your choice, and I’m not going to police the language you use about yourself. This post is about getting people to really listen to disabled folks about what we want to be called, instead of citing parents, professors, teachers, and professionals and telling us we’ve picked the wrong term.)

Posted March 7, 2013 by karalianne in Identity

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