Archive for the ‘disability’ Tag

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.

Advertisements

Responsibility.   1 comment

Someone made an incredibly ableist, bigoted, horrible comment on a very good post about how ADHD is harder on us than it is on the non-ADHDers in our lives. (I would say fantastic but there is some ableist stuff at the beginning about wheelchair users. Don’t worry, the blogger has been informed and responded really well to the criticism; I think I love her now.) This post is basically a response to that comment, which I will not reproduce here because I would need to ask permission first and I don’t particularly want to be in contact with this person directly. But I am going to try and respond to the comment’s points in the order they were made.

ADHD is a neurological condition (not a chronic illness; I am not “ill”) in which our brains simply do not work the same way as the brains of non-ADHDers. It is not our fault that our brains function differently.

[The comment makes comparisons to alcoholism and depression here and I am very uncomfortable with such comparisons, so I’m not going to do that here.]

It is important that people who have ADHD take responsibility for themselves and their lives. Explore treatment options, learn coping mechanisms, and develop and implement techniques and methods that help us manage our symptoms. When things don’t work, we need to be responsible and make changes and figure out what didn’t work and why, so that we can get things going again. Blaming other people is not a thing we usually do; blaming ourselves, on the other hand… incredibly common.

I have taken medication. I was diagnosed in February 2005 and took Concerta, then Dexedrine, then Strattera, then Dexedrine again. I stopped taking medication in 2008. In 2010 I started taking Adderall, and I took it until July 2013. I stopped because the medication was giving me indigestion and causing me to hyperfocus and giving me anxiety. And amazingly enough, the systems I had implemented while taking Adderall held up to the lack of medication. I have now been med-free for eight months, and I am doing really well.

I do not have a job outside of my home. I am a housewife and I work from home. This was necessary due to anxiety and how completely working decimates my executive functioning. Add to that my introversion, and you have someone who really needs to be alone a lot of the time anyway. I have used alarms, I rely on my day planner, I have routines in place to help me stay on task and get stuff done.

Here’s the thing about ADHD: even medicated, even with all of the strategies in place you can think of, even with all of the “fluff” taken out of your schedule (and then what fun is your life?), even with all of those things in place… ADHD is inconsistent. The only consistent thing about my ADHD is its inconsistency.

I lose track of time really easily. This is a hallmark of ADHD. Time is not concrete. I set alarms, I write things in my day planner, and I aim to leave at least half an hour before I need to be somewhere because it takes half an hour to get to the city from my house. In fact, I plan to leave 45 minutes to a full hour early so that when I am actually heading down the driveway it might actually be half an hour before I need to be wherever I’m going. That strategy doesn’t always work, of course. And when it doesn’t, I try to text or call my friends who I am going to be late for (same with babysitting). I don’t have to worry about appointments because I make them for during a weekday and I spend the entire day in the city so that I can be on time for the appointment without having to worry about that half-hour drive.

I don’t lose my car keys because I keep them in my purse. When I didn’t carry a purse, I kept my wallet and keys in a bin by the front door. Most of us have these systems in place. When we do lose something like this, it’s because our system got disrupted somehow. We dropped our keys or got to talking to someone on the way into the house and put them on the counter instead of the bin by the door and then the mail went on top of the keys and they’re missing because looking underneath things is hard.

ADHD is well-known, to be sure, but it is absolutely not well-understood. We have to deal with jokes about squirrels, comments about how we’re just making excuses, articles by doctors about how ADHD doesn’t exist, and diatribes like the one I’m responding to. We are doing our best. We are trying as hard as we can. We are being told, at every turn, that we are lazy, that we are incapable, that we are incompetent, that the label that helps us understand ourselves is fake, that the medication we take to manage our lives is unnecessary, etc. etc.

“Taking responsibility” for our disability (yes, it is a disability for most of us, please don’t pretend otherwise) means trying everything and still failing. It means that sometimes we are going to have to say “I’m sorry, my ADHD makes that really hard. I’m working on it.” It means that sometimes we need your forgiveness and understanding, because we did our best and everything fell apart anyway.

Because, frankly, listening to you tell me that I’m just making excuses doesn’t fly in polite company. It is disrespectful for you to assume that you know all about my life and how I manage my disability. You need to understand that when I have an ADHD-related “oops” that is not me thinking that “I’m soooo special and important and my time is soooo much more valuable than everybody else’s so just put up with me!!” [I quoted that bit directly. It was too perfect to illustrate this person’s attitude.], it is my ADHD choosing to bugger things up so that I look irresponsible.

I am not irresponsible. I am the complete opposite of irresponsible. I am not inconsiderate, either.

What I am is a person who has ADHD.

And that is not an excuse, it’s an explanation.

What’s in a Label?   1 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

Tagged with , ,

The Other Kids   Leave a comment

I first heard this song… last year I think? It’s a freestyle piece about what it’s like to grow up with ADHD. It made me cry the first time I heard it.

Posted January 10, 2014 by karalianne in Strength

Tagged with , ,

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.