Archive for the ‘disability’ Tag

Blogging Against Ableism: Dispelling ADHD Misconceptions   1 comment

This post is part of the Blogging Against Disablism initiative for 2017. Ableism is the North American term, and so that is what I use. Ableism/Disablism is discrimination and prejudice against people who have disabilities.

I spend a lot of time spreading accurate information about ADHD to people who have it or who think they might have it. Unfortunately, many times they come to me with comments their parents, teachers, and even doctors have made about ADHD. Comments that are not only inaccurate but ableist at their very heart. This post is going to list some of the most common misconceptions ADHDers deal with on a regular basis, and I am going to try and explain why they are incorrect and how they are ableist assumptions. I asked the question in a couple of places, and these are the things people named as the things that bother them the most. Thanks to everyone who answered my question. You can see all the responses in the notes on this post on Tumblr. (I’ve combined and adjusted and reworded.)


Misconception: ADHDers just need to try harder; it’s all about will power; you’re just lazy!

Reality: Based on my own experience and the messages I get from teens and young adults (and even some people my own age), we ADHDers are always trying harder than anyone else to do what we need to do. If being able to do things the way we want to do was just about will power, we would be able to change the world! …Instead, we have brilliant ideas and lack the ability to plan or enact a plan to make those ideas happen. Lazy isn’t a word I’d ever use to describe anyone with a disability, either. There’s a reason why one of the seminal books about adult ADHD is called You Mean I’m Not Lazy, Stupid or Crazy?!?

Why this attitude is damaging: Continually being told that you aren’t meeting your potential and being blamed for your failings as if you are morally corrupt or something takes a huge toll on your self-esteem. It’s not a coincidence that most ADHDers also suffer from something called rejection sensitive dysphoria (RSD), which is basically intense fear of criticism that results in a lot of self-flagellation and negative self-talk.


Misconception: ADHD is all about not being able to pay attention to anything; if you can pay attention to one thing for any length of time, you don’t have ADHD!

Reality: The term “attention deficit” is actually a misnomer; I prefer “Variable Attention Span” when talking about this aspect of ADHD. In essence, we can hyperfocus (focus for a really long time) on things, but we don’t always have a lot of control over what we’re focusing on. Hyperfocus usually latches onto something we find really interesting or rewarding, so either a special interest or something like a video game. I used to hyperfocus on reading (still do, if I give myself half a chance; words are fascinating).

Why this attitude is damaging: While distraction is part and parcel of having ADHD, it’s really important to recognize that we don’t have a lot of control over most of the things that characterize it. On top of this, assuming that ADHD means a complete inability to focus on anything results in people not being diagnosed when they are younger, hence missing out on a lot of years of treatment that could have been really beneficial to them.


Misconception: ADHDers are all extroverted class clowns; ADHD always means hyperactivity!

Reality: There are three types of ADHD, and only two of them include hyperactive and impulsive symptoms. Just as many ADHDers are introverts as non-ADHDers, too. On top of that, a lot of us have anxiety disorders that make us clam up in social situations.

Why this attitude is damaging: Assuming that only people who are always up and down and chatting with people around them can have ADHD means that people who have Inattentive ADHD go undetected and untreated.


Misconception: ADHD is something only little white boys are diagnosed with!

Reality: ADHD rates in adulthood are the same between genders. Symptoms are also shown at the same rate in people of colour as in white people. What this means is that women are more likely to be diagnosed with anxiety, depression, bipolar disorder, borderline personality disorder (etc.) than ADHD (these are also all common comorbid disorders), and it means that people who are not white often end up getting labelled as “bad kids”—and since people tend to live up to (or down to) your expectations, they end up in jail.

Why this attitude is damaging: Well, I kind of explained this above. It all leads to misdiagnosis, underdiagnosis, mistreatment, etc.


Misconception: ADHD is only a thing for children; if you’re an adult you can’t have it; if you aren’t caught in childhood there’s no way you can have it as an adult!

Reality: ADHD is a neurodevelopmental disorder. This means that it begins in childhood (likely from birth) and is caused by the way the brain develops. The ADHD brain tends to lag behind by about three years. You see where I’m going with this, right? If it’s about brain development, how on earth could it possibly just magically disappear when we reach adulthood?!?

Why this attitude is damaging: Given everything above about the stereotypes regarding what ADHD is, there are lots of people who don’t get diagnosed in childhood. Refusing to assess adults because of this kind of prejudice just means more struggling and more depression… and more suicide.


Misconception: ADHD isn’t real and if you just do [X faddy thing] you’ll be fine!

Reality: Plenty of studies have shown that the ADHD brain is physically different from the non-ADHD brain. A healthy diet, regular exercise, adequate sleep, and low stress levels all have a positive effect on the brain, regardless of whether or not you have ADHD; however, an ADHD brain will never function the way a non-ADHD brain does, no matter the diet, the exercise, the sleep, etc. Because it’s a physical difference.

Why this attitude is damaging: Thinking that ADHD isn’t real means that people don’t get assessed. Pushing unnecessary lifestyle changes as a “fix” can hurt people’s health and just adds to the implication that we are morally deficient.


Misconception: Taking medication for ADHD is a cop-out!

Reality: Medication is a tool that can be incredibly useful for managing the symptoms of ADHD. There is absolutely no shame in making use of all of the tools available to us in order to have a good quality of life.

Why this attitude is damaging: This attitude makes people refuse to use important tools that can be helpful in their lives. It causes parents to refuse to do everything that they can to help their children succeed in life. It causes people who do rely on medication to feel like they are failing. How is this beneficial?


Misconception: ADHDers shouldn’t have caffeine/sugar, it will just make things worse!

Reality: Caffeine affects some ADHDers by making them more hyper or waking us up, but others have no effects from it and the rest of us find that it helps with our symptoms and/or puts us to sleep! As for sugar, the brain runs on sugar. This means that sugar can help wake it up. Refined sugar is accessed much more quickly and burns out really fast as well, which is why some people seem to become hyperactive after having it: the sugar wakes up the brain and gets it running pretty quickly. The unfortunate part is that there’s often a big crash after it burns out.

Why this attitude is damaging: For people who cannot access medication but find benefit from caffeine, being told to avoid it can be really unhelpful. In addition, because the brain does run on sugar, it’s important to make sure your diet includes some sugars—just not necessarily too much refined sugar.


Misconception: ADHD meds will fix everything so that ADHDers don’t have any problems anymore!

Reality: Medication helps with symptoms, it’s true; however, it’s difficult to find the right medication and the right dose. It’s also quite common to find medication that helps with some symptoms but not all of them. I have found that my executive dysfunction in particular is not affected by medication (I keep holding out hope), meaning that while medication helps me curb my fidgeting and my impulsive behaviour, and even my inattention, it has yet to help me with initiation and inertia. On top of that, it’s important to remember that someone who has ADHD may well not have the skills we need for particular things in life, and medication doesn’t magically impart that knowledge.

Why this attitude is damaging: This attitude means that ADHDers may give up on medication altogether even if it helps in some very big ways. It also means even more shaming and moral judgments on us when we don’t know how to do something that “everyone” knows.


Misconception: ADHDers always do poorly in school and aren’t very smart!

Reality: IQ distribution in ADHD is the same as in the general population. When ADHDers do poorly in school, it is typically because of executive dysfunction—leaving assignments until the last minute, losing papers, forgetting things—or poor working memory—leading to low grades on quizzes and exams—rather than a lack of smarts. It’s quite common for ADHDers to be told that they aren’t working up to their potential.

Why this attitude is damaging: When you’re repeatedly told that you could do better if you tried harder, and you are already trying your hardest and still failing, you start to feel like a complete failure. There is obviously something wrong with you, if you can’t grasp something that is so easy for other people, or if you aren’t achieving what you’re capable of. Usually that something is a lack of work ethic or laziness, something morally wrong. See the first misconception for information on that.


I really wish people would spend a little time learning about ADHD and what it really is, instead of spouting these ridiculous, damaging things. There are so many ways in which ADHDers can be amazing additions to your life. Please do your part to help us do that. We are people, and we deserve respect. Yes, even when we aren’t meeting whatever standards you’ve set for us.

Society needs an attitude adjustment.

 

How to talk to (or about) people   Leave a comment

I’m reading a very goo book right now about respectful parenting.

However.

There’s always a “however,” isn’t there?

Even people who are wonderfully respectful of children make mistakes. I haven’t talked to the book’s author about the problem and I’m not telling you who it is because I don’t want people piling on this author.

The problem is in a passage about how we should speak normally to children. The author is making a great point — that we don’t need to oversimplify and should presume competence when we’re talking to children — but then hurts the overall point by saying that we should not talk down to toddlers as if they are “mentally deficient.”

Here’s why that’s a problem.

We say we shouldn’t talk to children like they’re intellectually disabled (ID). People with ID say that we shouldn’t talk to them like they’re children. (Actually, being talked down to is a problem for most disabilities, but the passage I’m talking about specifies ID with the phrase “mentally deficient” so that’s what I’m going to speak to here.)

Presuming competence is important no matter the person. Someone who has an ID should be spoken to with respect for who they are as a person, what they know (and what they might know), keeping in mind their actual age. Don’t talk to an adult as though they are a child; even if you end up having to simplify your language a little bit, you shouldn’t do that thing people do when they talk to small children or to adults with ID, where the voice gets higher and the words get shorter and the conversation gets stilted.

By the same token, a child should be spoken to with respect for who they are as a person, what they know (and what they might know), keeping in mind their actual age. Don’t talk to a child as though they are an adult; make sure you simplify your language based on their ability to understand you. And don’t talk to children in that high-pitched, unnatural cadence, either. They’re people, and they understand more than you think they do.

My son is 22 months old, and he is gaining language by leaps and bounds right now. It’s astonishing to me, the number of words he has gained expressively over the last few weeks. He mostly communicates one word at a time, but we can still have whole conversations. I just have to pay attention to context and ask questions.

For example, a common exchange after we saw Santa for photos before Christmas:

R: Shashi. (Santa)
Me: Yes, you saw Santa.
R: Up! Up!
Me: He picked you up.
R: Taw.
Me: You were so tall!
R: Bin, bin.
Me: Oh, did he give you jelly beans?
R: Yeah. Mmmm!
Me: They were yummy, huh?
R: Yeah! Tee!
Me: Oh yes, there was a tree there, too.
R: Yeah.

See how expressive he is with just one or two words? Most people who have ID can speak in full sentences (regardless of how they speak, whether with voice or AAC). On top of that, receptive language develops much earlier than expressive language, so the odds are pretty good that someone who doesn’t speak as “well” as you do does actually understand everything you say to or about them. I know my son understands most of what we say to him. (He doesn’t get our jokes yet, but that’s okay. We make a lot of puns.)

The author is making a great point with this passage and made a poor choice of words. I hope that it isn’t indicative of an attitude that people with ID should be talked down to (and I don’t think it is, I think it was just a mistake). Instead of including the bit about being “mentally deficient,” the passage could have simply said not to talk down to children and then explained that receptive language develops earlier than expressive language, which means that children understand way more than they can say. No accidental demeaning of people with ID.

This kind of attitude — these kinds of sayings — are ubiquitous in society. Take a moment when you’re writing or talking. Consider whether there’s a more accurate way to say what you want to say: one that won’t damage a group of people.

ADHD Awareness Month   Leave a comment

If you’re reading this blog, you know I have ADHD. (If you don’t, you need to re-read a bunch of my posts.) This means you’re aware of it. Job done, let’s all go home!

Except no.

Because what we need is awareness of the reality of ADHD. It’s not enough for people to just know that it’s a thing some people are diagnosed with, because there are too many misconceptions floating around and too much stigma surrounding both the diagnosis and the treatment methods.

The reality of ADHD is that I am going to see my ADHD doctor tomorrow morning to talk about getting back on medication. I’m breastfeeding, so stimulants aren’t recommended; I have researched antidepressants that often help with ADHD symptoms as well as anxiety, because anxiety and depression are clawing their way back into my life and I intensely dislike this sensation.

The reality of ADHD is that it’s not the same for everyone; while we often struggle with similar things internally, how that manifests externally is different for everyone, because ADHD is not a monolith and we are all individuals.

The reality of ADHD is that the diagnosis is a relief for many of us because we finally have a name for why we feel so different, an explanation for why things are so hard for us; and it is awful for many others because it is used to belittle them and to refuse them things they need.

The reality of ADHD is that it’s still not viewed by most people as an actual disability, which means that not only is it the punchline for a lot of really unfunny “jokes,” it’s also impossibly difficult to get accommodations for school, especially at post-secondary institutions in Canada that leave the final decision about things like extra time on tests in the hands of the professors. (That is Not Okay, just in case you were wondering.)

The reality of ADHD is different for each person who has it, so go ask the ADHDer in your life how it impacts them. And then really listen to what they say, and ask how you can help them deal.

Because nobody should have to be an island.

Posted October 16, 2015 by karalianne in Awareness Month

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Consistent Inconsistency (I)   Leave a comment

I doubt I’ll ever be good at keeping a blog the way people think they should be kept. “One main theme, and post regularly – if not daily, then at least once a week, on a schedule!”

That’s just not how I operate.

I’ve said many times in the past, “the only thing that’s consistent about my ADHD is its inconsistency.” And I think it’s important to recognize that, to embrace it sometimes, to work with it, and to enjoy it as much as possible.

I mean, inconsistency can be exciting. You never know when you’re going to forget a meal in the oven and have to scrounge for dinner. You never know when you’re going to get lost and learn a whole new part of the city. You never know when you’re going to fail to do the laundry for three weeks and end up wearing that weird dress someone gave you ten years ago that you’re shocked even fits you.

Did I say exciting?

Okay, I meant stressful.

Being inconsistent may be a consistent thing, but what doesn’t work one moment often works the next, so there’s no knowing from one second to the next what I’m going to be able to accomplish. This means that I will do all the right things, make my plan and have an idea of how my day is going to go, only to have everything fall apart and leave me standing in the middle of a pile of unfinished projects with a list of uncompleted (unattempted) tasks the length of my arm, and my primary achievement at that point is that at least I managed to feed everyone enough (including the animals).

This is stressful, as I’m sure you can imagine. It’s the unpredictability that drains me, far more than the actual lack of achievement. I’ve been an underachiever all my life, after all – hard not to be, with a brain that works this way.

But I want to do better. I want to do the things I plan to do. I want to achieve what I intend to achieve.

The fact that I cannot do this consistently (or, often, at all) is what makes my ADHD a disability.

Posted September 11, 2015 by karalianne in General Disability Discussion

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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.

Posted August 27, 2015 by karalianne in Identity

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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.

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.

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.