disability

A Support Role Taxonomy

Miri, , , , ,
Close-up of a life preserver.
Photo by Jametlene Reskp on Unsplash

A universal human dilemma: you need social support, but the type of support you need isn’t the type you’re getting.

You just want to vent, but your partner jumps in with advice. A sick person gets tons of gifts, but all they really want is someone to come over and spend time with them while they’re stuck in bed. Everyone wants to come hold the newborn baby, but nobody’s offering to do the parent’s laundry or make some meals for them.

This is complicated by the fact that most people find it difficult to articulate exactly what they need in terms of support, especially when they’re already in a rough spot. Even if they do know, and could verbalize it, many people feel like they shouldn’t look a gift horse in the mouth. So, sure, you don’t need all those nauseating frozen meals while you’re dealing with chemo, but at least they were nice enough to think of you, right?

It can help to learn how to identify what it is that you do need and how to communicate that to people. On the flip side, it can also help to learn which types of support you’re best suited to providing and look for opportunities to do those things—as well as to be careful not to push those types of support onto people who don’t need or want them.

Continue reading “A Support Role Taxonomy” →

A Support Role Taxonomy
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What ADHD Actually Is, Part 2

Miri, , , ,

Since I wrote part 1 of this series, I’ve had a lot of wonderful positive feedback from people with ADHD and suggestions for topics to cover in the future. I’ll address more of those here!

(If you haven’t read it yet, part 1 covers the definition of executive function and how it explains ADHD symptoms, along with information about hyperactivity, depression and anxiety in people with ADHD, helpful resources, and how to go about getting a diagnosis and treatment. I recommend reading it first.)

What’s the difference between ADHD and ADD? 

Before 1994, when the DSM-IV came out, the acronym ADD was used to refer to what we now call the “inattentive type” of ADHD–that is, the type where you don’t have hyperactivity symptoms. [1] Now, however, the term “ADHD” is an umbrella term that covers all of the types. Just because the “H” is in there doesn’t mean you have to have hyperactivity symptoms to qualify for that label. “ADD” is outdated and only typically used by people who got diagnosed before 1994. But if it makes sense to you, you can obviously stick to it.

Personally, calling it ADHD regardless of type makes much more sense to me because very few people with the disorder don’t have any hyperactivity symptoms at all–they just might not look like the typical bouncing-off-the-walls stereotype, especially in girls and adults of all genders. Hyperactivity can also mean needing to fidget a lot, or preferring physical/manual activity to intellectual labor. It’s also possible for some people to suppress all of their hyperactive impulses, which means that their observable behavior wouldn’t qualify for the hyperactive type. That doesn’t mean the impulses aren’t there, though, or that it isn’t taking them lots of energy to suppress them.

Why is the prevalence of ADHD increasing?

It’s difficult to obtain accurate data on historical prevalence of mental diagnoses for many reasons–underreporting (especially when it comes to childhood disorders, which parents might want to keep under wraps due to stigma), different research methods, different diagnostic criteria, and so on. According to the CDC, ADHD prevalence really is increasing, but they caveat that claim in the same way I just did. [2]

There’s a difference between more people getting diagnosed with a disorder and more people actually having that disorder. Greater awareness and improved access to mental healthcare could both lead to increased rates of diagnosis, even if the actual prevalence of the disorder has remained the same. I do think that things like that are impacting rates of ADHD diagnosis.

But I also think that a greater proportion of people would qualify for that diagnosis than 50 or 100 years ago, and I think it has to do with the greater role that executive function plays in modern society.

If you think about the types of things most people did for a living prior to the mid- to late-20th century, they didn’t require that much self-regulation. Farming, factory work, housekeeping, mending–these jobs are physically (and often mentally) demanding, but not in the same way as forcing yourself to spend hours at a computer correcting errors in a spreadsheet or researching funding sources. In fact, today, many people with ADHD strive in professions that rely on physical labor, creativity, lots of small bursts of social interaction, or other things that don’t require sustained focus on one thing.

It’s no accident that so many childhood ADHD diagnoses happen because a child can’t sit still in a classroom. Although our current education system dates to the 19th century (and has had shamefully few updates since then), children in the 19th century didn’t necessarily sit in a classroom from 8 AM to 4 PM. They missed school to help on the farm, taught younger classmates (think one-room schoolhouse), and left school altogether at much younger ages than today’s kids are required to stay until.

That doesn’t mean that our education system is the sole cause of increased ADHD prevalence, and that if we went back to some imaginary historic ideal, the prevalence would drop. (Although our education system is pretty shitty for a variety of reasons.) It just means that school and its demands on executive function often reveal ADHD symptoms that might’ve otherwise stayed hidden until later in life–for instance, when the demands of adulthood push people with undiagnosed ADHD to a breaking point.

Didn’t you say that overdiagnosis might still be a thing?

Yeah, I did. I mentioned in the first part of this series that a disorder can be both over- and under-diagnosed if we look for it in places it isn’t and don’t look for it in places it is. One place where we may look for ADHD too single-mindedly is in children who are “disruptive” or “unfocused” in school.

Plenty of researchers and clinicians have observed that children from violent and chaotic neighborhoods often get diagnosed with ADHD because they present with many of its symptoms. [3] However, in children as well as adults, those symptoms might also be coming from trauma, especially the complex trauma that develops when severe life stressors are constant from early childhood on. [4]

When the role of trauma is ignored, these children (who are typically from low-income families of color) often get slapped with the ADHD label, along with its cousin, oppositional defiant disorder (ODD). [5] Unfortunately, for children who are already bearing the burdens of racism and classism, these labels often serve to add on more stigma rather than help provide effective treatment. If you look at the criteria for ODD, they describe behavior that is completely rational and adaptive if many of the adults in the child’s life are violent, neglectful, and inconsistent. And if you look at the criteria for ADHD, they also describe what happens when undiagnosed PTSD limits your ability to self-regulate.

PTSD symptoms put a huge cognitive load on the brain. People with PTSD are usually hyper-vigilant, constantly looking for potential threats (often without realizing they’re doing it). Small disturbances or unpleasant surprises can cause strong reactions that seem excessive to others. When trauma comes from psychological abuse rather than physical violence or disaster, it can be even harder to notice when PTSD symptoms manifest.

A child who has complex trauma as a result of growing up amid violence and abuse is going to have serious issues paying attention in class and remembering their homework, along with maintaining healthy relationships with teachers and classmates and regulating their own emotions. On the surface, that can look like ADHD. But ADHD medication won’t help, and inappropriate use of ADHD medication on children can lead to those “zombie” symptoms everyone talks about. These kids need trauma-informed interventions, along with real structural changes that address racism, gun violence, poverty, and all of those myriad interweaving variables. No psychiatric label could possibly encompass that.

What’s the connection between ADHD and autism?

A lot of my friends have pointed out that they have been diagnosed with both ADHD and autism, and wonder what (if any) the connection between them is. I’ve also had lots of clients with both, although I obviously also know people with one or the other.

These disorders do co-occur more commonly than they would by chance alone. [6] Unlike mental illnesses, they both manifest in childhood and last for life (this is true even for people who don’t notice their ADHD symptoms until adulthood). They both involve executive dysfunction, and research suggests that some similar neural pathways may be involved in both. [7] They both tend to impact all areas of a person’s life, including school, work, relationships (platonic, romantic, familial, and others), self-care, personal pursuits, and so on.

This can make people stressed about figuring out which disorder they have, or if they have both. If this concerns you, remember that we made up these disorders and assigned sets of symptoms to them. They aren’t natural categories. Although diagnoses can be important for accessing treatment and support, the most important thing is identifying what it is that you struggle with and getting help with that.

If you have executive function issues, medication and/or coaching might help. If you have problems with talking over people and talking too much about your niche interests, it might help to get legitimate social skills advice (for instance, the excellent blog Real Social Skills [8]) or to seek out people who interact in similar ways to you. If you feel depressed or anxious as a result of the ways in which your disability impairs you or creates consequences for you in our (ableist) society, counseling can help.

Although there’s a lot of cool research going on involving brain scans and other relatively new techniques, that doesn’t actually explain why some people develop ADHD and/or autism and others don’t. It’s possible that the same set of root causes, both biological and environmental, can contribute to the development of both disorders.

Why can people with ADHD sometimes focus really well/get things done?

Remember, ADHD isn’t about being “unable to focus” or get things done. It’s about executive function. When a lot of executive function is needed to complete a task, people with ADHD will struggle with it. But when it isn’t, they may do very well.

Some situations in which people with ADHD may be very efficient or productive include:

  • when they’re really interested in the task
  • when it’s about to be due and panic kicks in
  • when it involves working with others
  • when they’re given a lot of structure

So, let’s examine each of these. Everyone has an easier time focusing on things they’re really interested in as opposed to things they find boring, and everyone generally finds it effortful to exercise their executive function. People with ADHD just find it harder than others. When you’re really interested in the task, you may not need to use executive function to do it. (You may need it to plan for or structure the task, though, which is why people with ADHD sometimes have difficulty accomplishing their over-arching goals even with stuff they’re really interested in.) Unfortunately, having issues with executive function can also make it more difficult to tear your focus away from something, which is why people with ADHD are prone to what’s called hyperfocus–spending too much time immersed in something to the detriment of other things that need to be done, including basic needs.

Remember, getting really into things you like doesn’t mean you don’t have ADHD. In fact, it could be good evidence that you do have it.

These principles also explain why so many people with ADHD procrastinate. It’s not just that they can’t get themselves to do the task in advance–it’s that procrastination works, but at a cost. When it’s the night before the 15-page paper you haven’t started is due and you’re completely panicking, executive function may no longer be necessary to get yourself to do the task. Other brain regions and processes take over–perhaps, for instance, the amygdala, which is involved in the processing of fear.

Social tasks can also be easier for people with ADHD to complete. The other people in the group may help them with staying on task, structuring the project, and perhaps doing the really boring parts that they don’t want to do. When working independently on a task, people with ADHD are liable to get stuck when they can’t motivate themselves to do a particularly boring or difficult task, or when they simply don’t know what the next step should be and get distracted by something more interesting before they figure it out. A team member may help them cross this hurdle.

Finally, people with ADHD may do very well with tasks when they’re given a lot of structure rather than having to create that structure for themselves. A person with ADHD may love their work (or studies, or whatever) and have few issues focusing on it, but effectively completing complex tasks requires being able to structure them–break them down into smaller tasks, put those tasks in the right order, and keep the big picture in mind rather than getting bogged down in one specific tiny part of the project. (Sometimes called microfocus, this can really get in the way of one’s goals.)

That kind of mental task requires executive function, too. Many people with ADHD do better in high school than in college because there’s more structure built in. For others, college provides enough structure, but work doesn’t provide enough. Still others luck out and find jobs in which structuring your own tasks isn’t required. That’s why many people with ADHD do well in or even enjoy working in retail or food service–as long as they can regulate their emotions well enough to avoid lashing out at irritating customers.

In sum, there are all kinds of situations in which the role of executive function is more minimal than it is in others, and many people with ADHD can thrive in these situations. That doesn’t negate the fact that they have a disability, or that it might still take them lots of effort and trial-and-error to get to that point.

People with ADHD can also learn to utilize the exact types of things that are hard for them–remembering to write things down, using planners, and so on–to make up for what they’re lacking in executive function. That, along with some other stuff I promised to get to (i.e. gender and ADHD), will be discussed in a future installment of this series.

[1] https://www.additudemag.com/slideshows/add-vs-adhd/

[2] https://www.cdc.gov/ncbddd/adhd/timeline.html

[3] https://www.theatlantic.com/health/archive/2014/07/how-childhood-trauma-could-be-mistaken-for-adhd/373328/

[4] https://www.nctsn.org/what-is-child-trauma/trauma-types/complex-trauma

[5] https://www.additudemag.com/oppositional-defiant-disorder-odd-and-adhd/

[6] https://www.additudemag.com/is-it-adhd-or-asd/

[7] https://nyulangone.org/news/tracing-neural-links-between-autism-adhd

[8] https://www.realsocialskills.org

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What ADHD Actually Is, Part 2

What ADHD Actually Is

Miri, , , ,

ADHD (or ADD, as it used to be called) is such a misunderstood disorder, especially among adults, that I figured I’d dedicate an article to clearing up misconceptions and helping folks who suspect they have it figure out what to do next.

First, some general principles that organize my thoughts on ADHD:

  • ADHD is a developmental disability, not a mental illness. (More on this later.) This means that it begins in childhood and lasts for life. Individual symptoms might wax and wane, and your environment may be more or less conducive to the way your brain works, but ADHD doesn’t get “cured.”
  • Therefore, you do not “age out” of ADHD. If you were (accurately) diagnosed with it as a child, you still have it.
  • It’s possible for a condition to be both over- and under-diagnosed. That’s not contradictory at all. It just means that we’re looking for it in places it isn’t, and we’re not looking for it in places it is.
  • Having ADHD does not mean you have to take medication, and not being helped by ADHD medication doesn’t mean you don’t have ADHD. Those are separate questions, and there are effective strategies for ADHD besides medication.
  • ADHD has neural substrates [1] (I hate using jargon, but there’s honestly no better way to say “a specific thingie happening in your actual physical brain blorb that relates to the behaviors or subjective states you experience and others observe,” so from now on, that’s what “neural substrate means), but like all disabilities, it’s also socially constructed in many ways. That means that culture and community influence how ADHD symptoms are expressed and understood. That means that we shouldn’t be surprised when ADHD presents differently in women, people of color, etc. Rather, that’s exactly what we should expect.

So, what is ADHD exactly? Here’s the only explanation that matters:

ADHD is a disorder of executive function.

That’s it. ADHD is not about being hyperactive, forgetting things, interrupting people, losing your homework, or any other specific symptom. You can have ADHD without exhibiting any of those classic behaviors, but everyone with ADHD experiences impairment of their executive functions.

What is executive function?

Executive functions are the brain processes that help you decide what to do and when to do it. Many of these processes take place in the prefrontal cortex, a region of the brain that evolved relatively recently and helps us with higher-order cognitive tasks.

There are lots of different executive functions, especially if you get really specific with it, but here are some examples:

  • inhibiting impulses that you don’t want to act on
  • temporarily storing information that you need to use or process (a.k.a., working memory)
  • choosing what to pay attention to
  • ignoring distracting stimuli, whether internal or external
  • figuring out what steps it would take to accomplish something
  • having a sense of how long things take (for instance, when you should start getting ready in order to leave on time in order to get somewhere on time)
  • sorting relevant information from irrelevant information
  • switching smoothly between thoughts or tasks (a.k.a., cognitive flexibility)
  • adapting quickly when a plan falls through or new information becomes available
  • paying attention to and noticing your feelings and impulses

All of us, including people with executive function issues, do these mental tasks all the time. Often they happen without conscious effort. For instance, when you read a book without getting distracted every time a car drives by outside, you’re using executive function skills. When you get dressed and leave the house in the morning, you’re using executive function skills.

There are many different components to executive function and they involve different parts of the prefrontal cortex, and other brain regions too. Executive function can be impaired by many other things besides ADHD, such as autism, inebriation, sleep deprivation (or, in my case, narcolepsy), and basically any mental illness. However, when you have depression, the executive function issues resolve when the rest of the depression symptoms do. When you have ADHD and depression, the mood issues might go away but the executive dysfunction remains.

How does executive dysfunction explain ADHD symptoms?

Let’s look at some typical symptom descriptions from the DSM-V criteria for ADHD [2]. First of all, I hate these because most of them are worded in a way that’s specific to children, and most of them just sound really negative and stigmatizing. But it’s what we have for now.

For instance, the phrase “makes careless mistakes” often comes up. “Careless” implies that the person does not care enough about the task, which is why they made the mistake. But that’s not how ADHD works. A person with ADHD might make a “careless” mistake for a number of reasons:

  • They were having trouble choosing what to pay attention to, and did not notice that they were making a mistake.
  • They didn’t realize that the area in which they made the mistake was relevant. It may be obvious to you, but it wasn’t obvious to them, so they didn’t make an effort to avoid the mistake.
  • They forgot a crucial piece of information that they would’ve needed to avoid the mistake and didn’t know how to go about finding out, or didn’t notice that they’d forgotten until it was too late.
  • They couldn’t make an accurate estimate of how long the task would take, and made the mistake or allowed it to remain in their rush to get the task finished.

Here’s another example: “often interrupts.” People with ADHD might interrupt others for different reasons, too:

  • They got so excited about what they wanted to say that they were unable to inhibit the impulse to speak.
  • They know that because of their impaired short-term memory, they will forget what they want to say if they don’t say it now–and they lack the cognitive flexibility to quickly find another way to solve this problem without interrupting.
  • They find it difficult to switch smoothly between speaking and listening.
  • They failed to pay attention to the fact that the other person was still speaking.

Other criteria for ADHD are simply examples of executive dysfunctions themselves, but sometimes diagnostic criteria aren’t very useful because they tend to describe how other people experience the person with ADHD, not how that person experiences their own life and their own mind. For instance, one of the most common things I hear from people with ADHD is “I just feel constantly overwhelmed, like I can’t manage my life and keep up.” That’s nowhere in the diagnostic criteria, and if you said it to a therapist they might assume depression or anxiety. (Which many people with ADHD have, more on that later.) But that’s the feeling that results when your executive functioning doesn’t match what your lifestyle demands.

What about hyperactivity?

Hyperactivity is kind of the red-headed stepchild of ADHD symptoms. Many people with the disorder don’t have it at all (though you wouldn’t know it from stereotypes and media representations), and it’s not necessary for the diagnosis. The DSM deals with this by dividing ADHD into “types”: inattentive type, hyperactive-impulsive type, and combined type. You can still have symptoms from the other category to be one of the “types,” you just have to be predominantly that “type.” It’s kind of confusing (and in my opinion, unnecessary).

Hyperactivity doesn’t initially seem to have anything to do with executive dysfunction, except perhaps in the case of impulsive behaviors. What about executive dysfunction would cause a person to need to fidget, or to talk very quickly or feel restless all the time?

I’m not convinced that ADHD as we currently think of it is all one disorder. I think it’s two that often go together: one that I’d call executive dysfunction syndrome, and another that some researchers already call reward deficiency syndrome.

(Unfortunately, one of these researchers is using the term to promote some dubious claims about genetics and substance addiction[3], but I’ll be using it more generally.)

I don’t want to get too derailed by talking about dopamine, but in a nutshell: when we do or experience things we enjoy, certain brain regions release the neurotransmitter dopamine–especially if the reward was unexpected in some way. The chemical is a sort of a signal to the body to seek out more of the thing.

We know that people vary in how much and under what circumstances their brains produce dopamine, as it’s linked to all kinds of neurological/mental conditions. But it’s possible, too, that there’s a sort of spectrum–for some people, a relatively small reward is enough to trigger a noticeable burst of dopamine, while others need much more.

Maybe people with hyperactive traits are those who need much more–so they’re always on the go, always moving, just to feel as engaged and interested as others may feel just from petting a cat or listening to the rain. And it would make sense, because dopaminergic pathways[4] are involved in executive function, too.

Anyway, that’s mostly (somewhat scientifically-based) speculation, and it doesn’t really matter. The point is, some people with ADHD struggle with hyperactivity, and some don’t. Executive dysfunction is really the core of the disorder.

And what about depression and anxiety?

If you have ADHD, you almost certainly have lots of symptoms of depression and anxiety, too. You may even qualify for the formal diagnoses of those disorders. Think about it: for your entire life, you’ve struggled to accomplish what others see as basic functions. You may have failed classes, dropped out of educational programs, gotten fired (or quit to avoid getting fired) from jobs, lost friends and partners due to executive dysfunction, and generally failed to accomplish what you want to accomplish. Worse, if you’ve been undiagnosed, you haven’t even had the language to explain to yourself (much less to others) why you failed at those things. You’ve probably internalized others’ opinions that you’re lazy, “stupid,” unmotivated, and unlikely to amount to much. Unless you come from a very privileged background, you’re probably terrified about your future and have no idea how you’re going to pay the rent given that you can’t “adult” well enough to get things together.

The thoughts that therapists consider indicative of depression and anxiety–“I’m a failure,” “Nothing’s ever going to work out,” “What if I lose this job/relationship/apartment,” “There’s no point in even trying anymore”–might actually be very “realistic” thoughts for a person with undiagnosed, untreated ADHD to have. Cognitive behavioral therapy teaches people with depression and anxiety to question their automatic thoughts and see how “irrational” those thoughts are. But what if you have very good evidence that you’re probably going to lose your job and alienate your partner, because that’s how it’s been for your whole life?

That’s why it’s very important for people who think they might have ADHD to dig beneath these thoughts and urge their mental health providers to do the same. Antidepressants, anti-anxiety meds, and therapy that’s focused on these symptoms can provide a bit of relief to someone with ADHD, but it won’t do much, and it won’t help with the ADHD symptoms. And that’ll only reinforce the belief that nothing will ever get better.

The good news is that medication, therapy, and lifestyle interventions that are targeted specifically at ADHD are very effective. Even knowing (or suspecting) that you have ADHD can immediately make things better, because it lets you stop blaming yourself and helps you access advice and support that’s helpful. So while your negative thoughts might be “accurate” in a sense–maybe you really have failed at basically everything you’ve tried, and maybe right now you’re failing too–with the correct diagnosis, all of that can change, and it can change quickly.

What should you do if you think you might have ADHD?

For starters, don’t invalidate your suspicions just because a professional hasn’t diagnosed you (yet). Most diagnoses happen because the patient noticed something first.

Unfortunately, when it comes to ADHD, a lot of medical professionals have their own biases which aren’t helpful to anyone in this situation. Be prepared to advocate for yourself a bit. The good news is that once you’re referred to the right professional, you shouldn’t have to keep advocating for yourself. They will advocate with you.

If you have a primary care doctor, tell that doctor about your concerns and ask to be referred for a neuropsychiatric evaluation.[5] These tests are performed by doctors with MDs or PhDs in clinical psychology, and they’re the primary way to diagnose ADHD. They’re also quite accurate because they measure neurological processes that can’t be faked or altered intentionally. So while some people feel nervous about not being believed when they say they have ADHD symptoms, these evaluations are a great way to put that concern to rest. You can’t fake these results just because you want stimulants.

If you don’t have a primary care doctor, but you have a therapist or psychiatrist, same thing. But if you’re not seeing any medical professionals, I’d actually suggest taking the counterintuitive route and setting up a primary care doctor first. They’re sometimes more likely to have a quick referral for a neuropsych eval available.

If you are uninsured, keep in mind that large medical systems and university hospitals often have substantial financial aid available. For instance, Ohio State’s Wexner Medical Center, where I get everything from my annual flu shot to my cancer surgery, provides assistance to anyone whose income is under 400% of the federal poverty line. Some people end up getting their care almost, or nearly, for free.

Most counties also have free or sliding-scale mental health services for uninsured residents. I’m employed by one of those. Our clients get counseling, case management, vocational assistance, psychiatry appointments, and other services mostly for free, and their medication is free, too, through a charitable pharmacy. The only issue with that is that charitable pharmacies won’t stock all psychiatric medications because some are very expensive. Stimulants tend not to be available, but that may not be true for every county.

(Also, here’s my regular reminder that until they have repealed the ACA, they have not repealed the ACA. If you can, apply for insurance this fall.)

Getting diagnosed can be helpful even if you don’t want medication. But even if you don’t get diagnosed, there are lots of ways to cope with your symptoms, whatever they’re technically called. If you have a therapist, explain to them that you’re struggling with executive function and ask them to work with you on that. If you can afford it, you can also work with an ADHD coach[6]. It’s an emerging off-shoot of life coaching that specifically focuses on the challenges faced by people with ADHD. (I actually hope to get trained as an ADHD coach someday when I can afford it.)

Besides that, two books I recommend to everyone who has or might have ADHD are:

  • More Attention, Less Deficit by Ari Tuckman [7]
  • ADD-Friendly Ways to Organize Your Life by Judith Kolberg and Kathleen Nadeau [8]

Here are some articles that people I know have found helpful:

Many people also find the ADHD subreddit helpful.

This article is already getting super long, so I’ll save all my other thoughts for part 2. (A preview: why prevalence of ADHD is increasing, what connection (if any) there is between ADHD and autism, how ADHD affects relationships and emotional processing, and why people with ADHD are sometimes very good at getting certain things done!

[1] https://en.wikipedia.org/wiki/Neural_substrate

[2] https://images.pearsonclinical.com/images/assets/basc-3/basc3resources/DSM5_DiagnosticCriteria_ADHD.pdf

[3] http://blogs.discovermagazine.com/neuroskeptic/2015/06/10/strange-world-reward-deficiency-syndrome-part-1/#.WrphwP0lExF

[4] https://en.wikipedia.org/wiki/Dopaminergic_pathways

[5] https://www.med.unc.edu/neurology/divisions/movement-disorders/npsycheval

[6] https://www.adhdcoaches.org

[7] https://www.amazon.com/More-Attention-Less-Deficit-Strategies/dp/1886941742

[8] https://www.amazon.com/ADD-Friendly-Ways-Organize-Your-Life/dp/1138190748/ref=dp_ob_title_bk

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What ADHD Actually Is

[guest post] Experiencing Ableism as a Person Who is Blind

Miri, , , , , 5 Comments

One of my readers, Tyler Ensor, wrote this post about the subtle ways in which ableism manifests itself in his life. 

When I was three years old, I was sick with flu-like symptoms for a week. Following one day of an apparent recovery, I awoke the next day completely blind. The blindness was caused by an autoimmune response. I am not well versed in immunology, so some of my description and/or terminology is probably incorrect. However, from what I can glean from doctors’ explanations of what happened, my immune system continued to fight the infection even after it had been neutralized. Because there was no longer an infection to attack, my immune system attacked my optic nerve, rendering me blind. My official diagnosis is bilateral optic neuritis.

Over the next several years, I regained some vision. I do not remember my exact visual acuity, but the last time I had it tested, my left eye’s acuity was approximately 20/350, and my right eye’s acuity was approximately 20/750. Perfect acuity is 20/20, and the threshold for legal blindness is 20/200. A person with 20/200 vision perceives objects at a distance of 20 feet with the same resolution that a person with 20/20 vision perceives objects 200 feet away.

My vision is now stable, and doctors do not expect it to change again. I am unable to read a computer screen; instead, I access computers using screenreading software. I can also read and produce braille. When travelling in public, I use a white cane.

I typically use the word “blind” to describe my condition. Technically, this is incorrect: Blindness refers exclusively to a complete lack of sight. So, using the narrow, scientific definition, a person who cannot see but who can perceive the difference between light and dark is not blind. The term for people with vision loss that doesn’t meet the scientific definition of blindness is “visually impaired.” Personally, I dislike this term both because it is ambiguous and because, at least to me, it seems to connote helplessness. The ambiguity stems from people’s lack of exposure to the term. Although most people—including those who have never heard the term before—will immediately recognize that it denotes a visual deficit, their first thought is likely to be: “So, how does that differ from blindness?” The term “blind,” conversely, is easily understood and, in my experience, people tend to interpret the term in its legal sense (i.e., not necessarily no vision) rather than its scientific sense. Therefore, for the remainder of this post, I will use the term “blind” in the generally-used sense rather than the scientific sense.

I encounter ableism in my day-to-day life on a fairly regular basis. Because I use a white cane when travelling, I have a visible disability (i.e., everyone who encounters me immediately knows that I am blind). The overwhelming majority of incidents of ableism I encounter are well-intentioned: They stem from ignorance rather than malice. Nevertheless, it can be extremely frustrating to deal with ableism. Below, I will describe some of the more frequent examples I experience.

I am a graduate student, and often walk home from my university rather than taking the bus in an attempt to obtain a modicum of exercise. It’s about a thirty-minute walk, and there are eight street crossings along the way. It is when I cross the street that I often encounter ableism. Sometimes, people ask if I would like help crossing the street. There is nothing wrong with asking, and I always politely decline. However, far too often, people refuse to believe that I don’t require assistance, and they proceed to “help” me cross the street anyway. The mildest form of this “help” is simply the person saying “It’s safe to cross” when the light changes. This is sort of annoying, since I have already told the person I don’t need help, but it’s so innocuous that I would count myself fortunate if this was the extent of the ableism I encounter. However, in other situations, the person will grab my arm and walk with me across the street. The worst example of this street-crossing help—and, thankfully, the least common—involves a person grabbing me without asking and without warning. It is very unsettling to be grabbed by a complete stranger. There are very few situations in which it is permissible to touch a stranger without permission, and this is not one of them.

Being given unsolicited help across the street might seem relatively mild. In some respects, it is. I have never feared for my physical safety from any of these people, and I believe that they honestly think they are doing me a favour. However, it is also a very awkward situation from which it is difficult to extract oneself without being perceived as rude. Consider the following: A person approaches me on the street, and asks if I need help crossing the intersection. I smile and say: “I’m okay. Thank you for offering.” Then, instead of believing that I’m telling the truth, the person grabs my arm and begins walking/pulling me across the street. What now? If I say: “Don’t touch me”, onlookers may think I’m overreacting or being rude for no reason. I don’t know for a fact that this is what they would think; however, I have never had an onlooker step in and say: “He told you he doesn’t need help.” Obviously, some people might simply not want to get involved (which is completely understandable), but the fact that this has never happened leads me to believe that a subset of onlookers believe the “help” that I have declined is not actually unwanted. My other option when grabbed is to simply acquiesce to the help. To me, this always feels like I am perpetuating the stereotype that blind people are helpless and dependent on the charity of strangers. (As a somewhat irrelevant aside, I always wonder how these people think I cross the street when no one is around to “help” me.)

It has been suggested to me that I should take situations like the one described above as an opportunity to educate people about blindness. Rather than being frustrated or feeling embarrassed, I should explain to the person why what she or he did was inappropriate. I have no problem with people who are blind taking this approach if it is what they want to do. Unfortunately, many people who give this suggestion tend to imply that it is obligatory for me to educate people. I have attempted this on occasion, but I find it exhausting and unrewarding. In general, people have taken my attempt at education as an invitation to ask a series of personal, sometimes-offensive questions. Common examples include: “How did you go blind?” “Are you sad that you’re blind?” “Do you even know what you look like?” “Do you know what colours are?” A surprisingly large number of people have actually attempted to administer an impromptu eye exam by insisting that I tell them how many fingers they are holding up. Obviously, not all questions are inherently offensive. Asking me how I went blind is appropriate if we are friends, or, possibly, even if we are just getting to know each other. However, consider what the possible answers could be, and how awkward they could make the conversation with a complete stranger. What if I am blind as a result of a brutal attack? What if my blindness is quite recent, and stems from a terminal brain tumour? It is odd that, while most of these people would be uncomfortable asking me personal questions about, for instance, my sex life, they are less inhibited when it comes to personal questions about my blindness. After all, such questions are questions about my medical history—a topic that is generally accepted as personal by most of society.

I want to re-emphasize that the reason the questions I am asked are problematic are because they come from complete strangers. After someone gets to know me for who I am rather than for my blindness, I am not bothered by tactfully-asked questions—curiosity is obviously natural. In some situations, I will explicitly invite questions with the assurance that I will not be offended. For example, I recently began a graduate program in cognitive science, and I invited my supervisor to ask any questions she had about my blindness. Because we conduct research together, it is crucial that she understand any limitations I might have, and thus I thought it was important to invite questions.

As I am sure readers of this blog can imagine, there are a plethora of other examples of ableism I encounter that I have not discussed here. Primarily, this is because I want to keep the length of this post under that of an average novel, and I think it’s already nearing the point at which people will have stopped reading. Note, too, that I am not trying to personally attack the people who exhibit ableist behaviour; I am sure I have said or done ableist things in the past. Rather, I wrote this in the hope that it will educate people. If there is one thing to keep in mind when interacting with people who are blind—or, for that matter, people with any disability—it is that you should look at them as a normal person who happens to be blind, rather than as a person who is defined primarily by the fact that they are blind.

Tyler Ensor grew up in Southern Ontario, Canada. He received a bachelor’s degree in psychology from Wilfrid Laurier University in Waterloo, Ontario, and is now pursuing a Master’s degree and PhD in cognitive psychology at Memorial University of Newfoundland. His research focuses on human memory.

[guest post] Experiencing Ableism as a Person Who is Blind

"I'm a strong woman and I don't need help."

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A common argument against interventions that aim to decrease harassment and violence against women–conference harassment policies, stronger anti-bullying measures on social media, and so on–is made by women and goes something like this: “I’m a strong woman and I don’t need to have my hand held.” Sometimes this is served with a side of “You’re the real sexist if you think that women are weak enough to need this.”

There are a lot of false assumptions layered in these statements. Namely:

1. That not needing certain protective measures makes you “strong” relative to others.

According to the fundamental attribution error, people tend to overemphasize the role of others’ internal characteristics and underemphasize the role of the situation they are in when trying to explain others’ behavior. In this case, many people observe others asking for harassment policies, trigger warnings, and the like, and attribute this to those individuals’ supposed “weakness” rather than to situational factors.

This discourse of “strength” when it comes to harassment and bullying troubles me. What I’ve generally found is that an individual’s ability to “deal with” harassment and abuse has less to do with how “strong” they are and more to do with other factors: social support, personal history of victimization, and feeling otherwise safe in the current environment, for instance.

Further, one’s likelihood of experiencing harassment and abuse in the first place has less to do with how “strong” they actually are, and more to do with how they are perceived by others. While individual factors have some impact on that, so do social categories that people use to think about others. Women with disabilities are extremely likely to be sexually abused because others perceive them as unable to speak up or get help, and because they perceive everyone else as unwilling to believe the testimony of a woman with a disability. Sadly, the latter is often true.

Therefore, feeling able to handle contingencies like sexual assault and harassment on your own, without help, is often more an indicator of privilege than superior personal traits. It certainly is for me. Part of having privilege is having difficulty seeing how other people may not have the same opportunities or experiences as you, for reasons that are not their fault.

2. That recognizing that some people(/women) need protective measures is bigoted(/sexist).

This is the gender version of another of my favorite bad arguments, If You Notice Race Then You’re The Real Racist. No, Real Racists (insofar as there is such a thing) are people who have managed to convince themselves that they “don’t see race” while continuing to judge and discriminate on the basis of it.

In the real world, there is sexual harassment and assault. In the contexts that we’re discussing, such as conferences and college campuses, sexual harassment and assault are most commonly perpetrated by men against women. Although harassment policies, anti-bullying measures on social media, and other initiatives of that sort have the potential to help anyone regardless of gender, most people correctly note that the initiatives are being created with female victims in mind–because that’s the majority, and because the loudest voices in anti-sexual violence advocacy tend to be women.

Noticing reality is not bigoted in and of itself. (But it’s possible to discuss reality in a bigoted way, obviously. For instance: “Women are the majority of sexual assault victims because men are slavering beasts” or “There tends to be more violence in neighborhoods where the residents are predominantly Black because Black people are more violent.”) If it is true that women are the majority of sexual harassment victims–and, according to current research, it seems to be–then it makes sense to be concerned with reducing sexual harassment against women.

But as I mentioned, such protective measures are useful to anyone who experiences harassment or assault, regardless of gender. When you say that such measures are by default sexist against women, you are assuming that all potential victims are female, and ignoring all the ones who are not. Although I do so hate to play “You’re The Real _____,” it is actually quite sexist to assume that men cannot be victims of sexual harassment or assault, and quite cissexist to assume that non-female, non-male people don’t even exist, as victims or otherwise.

3. That “strength,” whatever that is, is a quality that everyone ought to have, regardless of personal circumstance, and having it makes you clearly superior to those who don’t.

This is probably the main reason this response arises. A lot of people feel good about themselves when they position themselves as strong and independent and maybe a little bit better than those who can’t “take care of themselves.” In this way, the “I’m a strong woman” narrative is actually sort of a reasonable response to sexism. When you’ve been told implicitly and explicitly your entire life that you’re weak because of your gender, why not reimagine yourself as strong? Stronger, perhaps, than other women?

But when you say, “I’m a strong woman and I don’t need this,” what does that say about the women who are not “strong,” who do not consider themselves “strong,” who cannot be “strong” in the ways that you are referring to?

I was originally inspired to write this post after a discussion on my Facebook about an article that I posted about interaction badges. This is a measure implemented at some conferences for Autistic people to help them set boundaries around social interaction. Red badges mean, “Do not initiate interaction with me”; yellow badges mean, “Only initiate interaction with me if we know each other”; and green badges mean, “I would like to talk but have trouble initiating; please initiate with me.” The badges are very useful for people who sometimes have trouble reading subtle social cues from others or sending such cues themselves, which describes many people on the autism spectrum.

I posted about this idea and said that it would be a cool thing to implement at the conferences I go to–not just because plenty of ASD folks attend these conferences too, but because it would be helpful for lots of people neurotypical and otherwise. Predictably, someone said that they’re a “strong woman” and they don’t need this and so on. A friend of mine responded that, well, some of us aren’t strong, and some can’t set boundaries, and why do these people deserve to feel uncomfortable or even unsafe just because they don’t have the capability to be “strong” in this way? How is that fair at all?

There are plenty of legitimate reasons someone might temporarily or permanently lack the ability to assertively set boundaries. People with autism sometimes experience selective mutism, which means they cannot speak. People with social anxiety or similar conditions might panic and be unable to relax and find the words they need. In more extreme situations, sexual assault victims often experience a sort of paralysis that prevents them from being able to speak up and say “no.” This is a documented effect.

Setting boundaries is often exhausting, and different people have different amounts of energy (or spoons, if you prefer that metaphor) to do it. If colored badges make a space more accessible, why not? If you personally don’t need it, who cares?

4. That these protective measures are being implemented with the assumption that everyone needs them.

Actually, most people do not get harassed and assaulted at conferences or elsewhere. Some of the people who do get harassed and assaulted at conferences or elsewhere will have ways to cope and deal with that on their own, without using the resources made available to them by that space. When I was assaulted in college, I decided not to report it or utilize any campus resources for survivors because I didn’t feel that I needed them. When I was harassed at conferences, I decided not to let the organizers know, because I preferred to deal with it in other ways. To the best of my recollection, I have never used any formal procedure for dealing with harassment or assault, for my own personal reasons.

So, for various reasons, you may not need to use a protective measure in a given space. That’s great! Nobody implied that you, personally, need this measure. If you don’t end up experiencing harassment or assault, that’s obviously good. If you do, but you’re comfortable handling harassment or assault on your own, then you don’t need to avail yourself of the measures in place to help survivors. But not everyone is, for more reasons than I’m able to list.

This is why “I’m a strong woman and I don’t need this” ultimately falls so flat for me as an argument for or against anything. Claiming that harassment policies are useless because you don’t personally need them is no more sensible than claiming that a restaurant should not have vegan options because you’re not personally a vegan. And claiming that harassment policies somehow imply that all women (yourself included) are weak and need protecting is no more sensible than claiming that the mere presence of an elevator is accusing you of laziness.

There are people who sometimes need harassment policies and there are people who sometimes (or always) need elevators. If you don’t, ignore it and go about your business.

Or, better yet, understand that others may need help that you do not, and support them in their effort to get it.

~~~

I’ve previously written some other stuff related to this argument:

Also of relevance is the fact that the “strong woman” narrative has particular meaning and significance for women of color.

"I'm a strong woman and I don't need help."