Passing Means Always Passing: How Disability Systems Punish Functionality

Standard

I’m hitting the edge of some burnout right now, which is not really news in and of itself (there’s a lot of shit going down in my life), but what’s different this time around is that I’m very actively involved in an advocacy program and I’m seeing a. the types of services and programs that people who are less functional than I am receive and b. how hard it is to access services. Mixed in is the realization that most people don’t think of me as disabled. When I act disabled they get confused, frustrated, and angry. If you’re disabled, you’re generally expected to be exactly the same amount of disabled all the time. But that’s not how it works.

I can generally pass for neurotypical. I can be independent. Until I can’t.

There are two ways that this comes back to bite me in the ass: one is in terms of the services and supports I might want, and one is in terms of the personal blowback that comes from being disabled and neurodivergent. These problems appear either when I start to experience burnout from pushing myself to be functional for so long, or when stresses start to add up and I can’t keep up anymore.

There is literally no system in place to allow temporary respite for people with disabilities. There is absolutely respite care for families and caregivers, but there’s no system that will say to me “sure, take a vacation come stay at this place and we’ll feed you/take care of you, and we’ll cover your lost wages so that you can actually afford to take this break”. That sounds preposterous to me even typing it, because I have been so conditioned to think that I don’t deserve something like that, despite the fact that it would completely change my life for the better, make me more productive, more stable, more happy.

In order to receive services through the government, you have to prove beyond all shadow of a doubt that you are super disabled and really absolutely definitely need services or money. That means that if you are capable of holding down a job, if you make any amount of money, if you aren’t visibly disabled, you don’t get services, much less temporary services until you can get back on your feet that are easily accessible during a crisis.

Most services ask simple questions about your functioning rather than looking at how that functioning affects you. I can work, yes, but it exhausts me to the point that I sleep for 14+ hours in a go at least once a month. I can drive, yes, but it sets me on edge and gives me massive anxiety. I can call and make my own medical appointments, yes, but that’s about all I can do in a day. I have demonstrated that I can do these things, and now I’m expected to do them without any kind of repercussion to my well being because I’m “high functioning”. People don’t notice that they stack expectations very quickly: once you’ve demonstrated you can do one thing, they expect one thing AND.

If you can fake it for some amount of time, the system is not interested in the burnout or the toll it takes. It is not interested in prevention. It barely has the funding to help those who are already in crisis, much less those of us who would prefer to avoid a crisis.

On top of all of that, when you can mask for a while people start to think that that’s who you really are, or that it doesn’t affect you.¬†We’re all so used to hiding our disabilities that when we can’t, it can result in all the ableism we’ve hidden from coming crashing down on us. Jobs assume that if you could complete the task yesterday you should be able to complete it today (and when you can’t you get consequences, or may even lose the job). Friends and family don’t understand why sometimes you can socialize and other times you can’t. It can look like you’re just an asshole if you work very hard to maintain relationships most of the time, but when you get burnt out you stop returning texts and phone calls or forget to reach out, miss a birthday, can’t be supportive.

Underlying all of these problems is the lack of recognition that “functioning” requires lots of other supportive activities: work requires showering and eating and transportation and sure maybe I can do one piece of that but not all of it. Maybe I can afford to maintain a home but I don’t have the spoons to keep it up and no one is around to help with that. Passing means being able to do all of the tiny things that keep up the facade around whatever you do: if you want to pass at work you have to pass enough to go out with coworkers, enough to bus or drive, enough to pack a lunch.

This is horrific for people like me. I can function well enough for long stretches, but one of the most common symptoms of autism in people like me (and particularly women) is exhaustion and fatigue. I am tired all the time. When I have a major event it takes me weeks to recuperate (case in point, my work’s conference and gala were two weeks ago and I’m barely starting to feel human again). If we’re lucky we find jobs and people who understand that our energy and functioning fluctuate, people who will pick up the slack when we’re struggling to get from bed to the car to work. But if we’re not lucky? We push ourselves until we can’t move, we become immensely depressed, we don’t understand what’s wrong with us because shouldn’t we be able to do all the things everyone else is able to do?

There are no supports when you can pass some of the time. It sucks.

Thinking About Disability Advocacy When Planning End of Life Care

Standard

As life is wont to be, things are complicated for me right now. Due to a variety of low key health things, my parents are redoing their wills/power of attorney/etc. and have given my brother and I the gift of having ours done as well.

So here I am, a 27 year old disability advocate, thinking about what I want out of end of life care, and I’m finding that I’m suddenly being asked in a very serious way: do I believe it when I say that I believe people with significant disabilities can live good, worthwhile lives. Do I want to be kept alive with significant brain damage? What about paralysis or physical loss of functioning? My gut says no, but when I stop and think about it, the disability community has told me that those lives are just as valuable as my own. Can I truly internalize that?

Add on top of that that I already manage a chronic condition, that I’m low key suicidal like 99% of the time (I’m fine, it’s a passive thing), and that I’m frankly lukewarm about life overall, and I find myself concerned and confused.

Is it ok for me to think that MY life wouldn’t be great and that I would want to die if I lost any quality of life, while still maintaining that other people in similar situations could have perfectly great quality of life? How does this play into the very real problem of disabled people being killed with the rationale “It’s better for them”? There’s some image that it’s freedom to die if you’re disabled (which was thrown into sharp relief for me this week after Stephen Hawking died and people actually literally said those words, drew comics of them, and implied that it was good he wasn’t suffering anymore).

I’m chewing on a lot of this, and I can’t say that I have answers, but it’s interesting to notice the places where your abstract values require concrete commitment in your own life, and the way that’s completely different. I believe that disabled people can have fulfilling, good lives because they have told me so. But do I trust them enough to say that I’d live that life if something were to happen to me?

Part of the challenge with writing a medical directive is that you’re trying to imagine every contingency. I have no idea what conditions I might be addressing. And when you’re writing the directive, you’re assuming that you would be incapable of making your own decisions, which already assumes that things are pretty nasty. There’s probably a significant difference between the types of things that would cause me to require ongoing medical treatment to stay alive AND would render me incapable of giving my own consent vs. ongoing disability.

I’m currently leaning towards saying that I would prefer minimal effort be made to keep me alive. I have already experienced years of life quality that I will not live through again. I have promised myself that if I ever feel that way for months on end again, I will ensure that it stops, however I can. I live my life protecting myself from potential pain of all kinds. I firmly believe that people have the right to not live anymore, just as they have the right to live.

Does saying “I don’t want that” mean “other people also shouldn’t want that”? Obviously no. Is it different when it’s life and death? Maybe. Does saying “I would rather die than live like that” mean other people shouldn’t do it…maybe not. I can very clearly say that I would rather die than go back to the college I went to. I have nightmares about it regularly. But there are other people who have lived there and been immensely happy.

One of the things that is becoming apparent to me as I speak to more people about disability is that the experience of it is individual. Some people responded to Stephen Hawking’s death by saying “I would kill to be out of my wheelchair”. Others say that their wheelchair is freedom. When you get the choice, or at least a little bit of choice, it makes sense that there isn’t a right or wrong answer, and that the deeply personal choices you make about end of life care aren’t (necessarily) some kind of political statement about the value of life.

But even so, I want to be deeply and carefully aware of how my particular preferences are informed by a culture that says disabled lives aren’t worth living, and I want to question that narrative as often as possible. In some ways I am a coward for knowing that more often than not I cannot tolerate life. But I’m also a realist, and I don’t think it does anyone justice to shy away from the times that life is truly suffering. As always, this is the dichotomy of disability: I am worthy. I am in pain.

Coming Out Disabled Part 3

Standard

I promise that some day I will write something shorter than a 3 part series, but today is not that day. Instead, today I am going to finish out my series on coming out disabled, with some final bits and pieces you may want to consider when coming out.

The first of these is that when you come out you are in some ways taking on the task of educating people. Note that I don’t say you have the responsibility or you’re agreeing to. You shouldn’t HAVE to. BUt unfortunately if you want people to understand what you’re saying and respect your accommodations, it’s highly likely that you’ll end up doing a lot of education.

So one thing you want to consider when you’re going to bring your family and friends along into the world of disability with you is how much you trust them to educate themselves, how much energy you have to educate them, and what all they need to know. In some cases this can actually be a really cool process; if your loved one is interested, open, and curious, they’ll probably do some research themselves, but ask you about your experiences. Being able to talk openly about your disability can feel relieving and validating. Even though it does take spoons and time to explain stuff, it can also feel like growing closer.

On the other hand, if your loved one isn’t super invested in the process it can be total shit. It’s exhausting when you’re always the one who has to bring up your needs, and since we’re trained to feel like setting boundaries is asking for extra special treatment, you can feel needy or whiny. You’re not. It can feel like an impossible choice to decide whether you want to keep a diagnosis to yourself and try to navigate your needs alone, or disclose and spend time educating and convincing people that you deserve respect and validation. I hear you. It sucks.

What I will say is that in one of those situations you’re not ever likely to get support. In the other, it’s possible people will learn and grow along the way. If you’re uncertain about how family or friends will react, I strongly recommend talking it out with a therapist or someone else you trust, particularly someone who has experience with the people you’re not sure about.

It’s also possible that you have just received a diagnosis, and you’re learning along with your family. In my opinion, it’s great to be upfront when that’s the case, and ask for help in finding resources and services. Sometimes it can be easier to learn about the diagnosis together with your support system, if only because other people prefer to be helpful rather than be educated.

The final concern that I want to bring up here is the possibility that someone else might out you. That sucks. Never talk about someone else’s disability unless you’re certain they are open. But sometimes it happens. I once had an executive director mention that I was autistic to our entire leadership team without asking me. What do you do?

This only becomes a problem if you find out about it, but when you do you have a few options. You can decide to be open and out, answer questions, and live that outness. That’s what I decided to do, because I had no problem being out at work it just hadn’t seemed like the right time yet.

If that’s not an option, you can set a hard boundary: “Yes, I am autistic, but I would prefer not to talk about it. I’d also appreciate it if you don’t treat me any differently because of it.” This won’t necessarily stop people from wondering, or changing the way they act around you, but it might help. You may also want to mention to the person who outs you that you’d prefer they let you decide when to disclose. Honestly if it were me, I might even say that immediately after they out me, because I would prefer for those in hearing distance to understand that it was inappropriate, and it’s not something to be shared further.

Do you have any further questions about coming out about your disability? What was the hardest part for you? What did you learn?

Coming Out Disabled Part 2

Standard

Welcome to part 2 of the Coming Out Disabled series! In part 1 we talked about who you might want to come out to, the pros and cons of coming out, and why you’d decide to do it. Here in part 2 we’re going to get practical: what should you actually say to someone when you come out as disabled? What are some scripts? And how do you manage when it doesn’t go the way you planned?

Formal Disclosures

Let’s start with the relatively simple; formally disclosing. This is disclosing at work, school, or another environment where you are legally protected and want to ask for accommodations.

“Employers are compelled under the ADA to make reasonable accommodations for qualified individuals with disabilities. An accommodation is a modification or adjustment that allows the individual to participate in the interviewing process or to perform the essential functions of his or her job. Examples of reasonable accommodations include providing written instructions, allowing the use of headphones to block office noise, a modified training program, flexible scheduling, etc.”-from Workplace Disclosure

In these circumstances it’s best to stay short and to the point. As we mentioned in the last post you may want to preemptively disclose if you feel that the environment is right. In that case you might say something like “I have autism. In particular I struggle with executive function, verbal instructions, and task prioritization. I don’t need accommodations right now, but I may in the future and would like it on record.”

More common however, is that you need an accommodation and you’re asking for something specific. In those cases it can be very beneficial to plan your actions ahead of time. Brainstorm (alone, with a therapist, with a trusted friend or family member) what accommodation may help you the most. Take the time to decide who you will disclose to: do you have an HR department? Do you feel comfortable disclosing to your direct supervisor? Is your direct supervisor the one who is causing problems, so you need to go to their supervisor?

Choose the person who is a. most effective at getting you the accommodation and b. that you feel comfortable speaking with. You can disclose in person or through email, whatever feels the most comfortable to you. Eventually you will probably want to get any formal accommodations in writing.

The script will probably go something like this “I have autism and because of that I have some difficulty with sensory processing. That means that the noise in the office is incredibly distracting and sometimes painful to me. I’d like to bring noise cancelling headphones as an accommodation.” You may want to provide some kind of brief information about the concern you’re bringing up to help educate your supervisor/teacher/etc.

Remember that accommodations have to be reasonable, so there is the possibility that you may not receive every accommodation you ask for, or your employer/school may suggest an alternative. However if you feel they’re ignoring the ADA you do have options, which we’ll address in part 3.

Personal Disclosures

There is no single script for disclosing to family, friends, and other close people. That’s because when you come out to your family and friends, you’re not just telling them one piece of information. You’re educating them about your entire diagnosis.

Coming out to your family is likely to be a much longer process of education and renegotiation about what you’re capable of and what supports you need. This is where the metaphor of “coming out” is particularly apt: within the queer community, people talk about the fact that you’re never done coming out. You have to keep deciding with each new person how much information to share.

That is also true with disabilities, but there’s an added layer for disabilities: for each new difficulty, need, and support you have to decide how much you want to share. For example you might tell your parents that you’re autistic, and explain that this is why you have struggled with friendships, with an intense fascination for rules, with falling too deeply into certain interests. They accept it.

A couple months later you realize that one of your struggles is with plans that change unexpectedly. Do you tell your parents and ask them to give you advance notice when things might change? What about a couple months later when you realize talking on the phone gives you anxiety and you’d prefer they text?

We’re told that having these kinds of preferences is picky and demanding, so it can become harder and harder to be open and honest the more accommodations you have to ask for. Part of coming out is the self care and self awareness to remind yourself that even if other people don’t accept your requests, they are still valid. You can set boundaries, and you deserve to have those boundaries respected.

My friend Jillian summed it up nicely:

“People are often afraid to disclose cause people might judge them, but I try to remember that the people that would judge me for disclosing are going to be the same ones that will judge me if I don’t disclose and happen to be autistic in a situation. Those aren’t the people I want in my life, or the places I want to be.”

Ok But Really What Do I Say?

Alright, fine, I’ll give you some scripts. To start out with, it can be nice to disclose to someone close to you when you’re not asking for anything. You might say something like:

“Hey mom/dad/friend/partner: I wanted to let you know something pretty important. I recently received an autism diagnosis/am autistic. There’s a whole lot of information about autism out there, but I want to give you an idea of what it means for me.

My biggest concerns are (fill in: sensory issues, executive dysfunction, eye contact etc. with a brief explanation of any technical terms and one or two concrete examples). If you’re interested, I can definitely tell you more about it, or give you some examples of how it affects my relationship with you. It might mean that I’ll ask to do things a little bit differently in the future and it would mean a lot if you can be supportive.”

They may have questions. Feel free to share as much or as little as you feel comfortable, and where you don’t feel comfortable just say “That’s a little personal. I might share it later, but right now let’s talk about (fill in other subject they seem curious about)”. They may disbelieve you or question the diagnosis. You don’t have to prove the validity of your diagnosis. Just stick to the story. “I am autistic. I don’t care if you believe it or not but I need you to respect that identity and respect my needs.”

Once you’ve established the diagnosis you may want to ask for specific accommodations. That can be pretty similar to a formal disclosure: “Hey mom: talking on the phone makes me incredibly anxious because of my autism. Can you text instead?” If you’re running in to pushback on these types of things, there are some amazing resources on setting boundaries out there. You deserve to have your diagnosis taken seriously and respected, and that should be a boundary that you set with those closest to you. You also deserve to have your accommodations respected, and you get to set the boundary that if those accommodations aren’t met (or at least if folks aren’t attempting to meet them) you will no longer be around them.

This is where disclosure gets hard. Because you may have to repeat yourself. A lot of times. Your family and friends may think they “get” it, but still forget, or still not fully believe it, or still question it somewhere in their brain. Disclosure is repetition. “No, I still cannot cook because the executive function of it makes me anxious. Yes, I know it’s been 5 years since I’ve had an eating disorder, this isn’t about that.”

Disclosure is also specificity. It’s about helping the person you love to understand presume competence, believe disclosure. What does that mean? It means explaining that while I can’t cook that meal, I’m perfectly capable of baking a cake from scratch because those are totally different. It’s explaining splinter skills: yes, I can do advanced calculus but no I can’t balance my budget. It’s constantly reiterating which places you need help and what that help looks like, while reminding that you’re not fragile, weak, or incompetent.

At its heart, disclosing to family and friends is agreeing to educate them, and educate them thoroughly on what your disability is and means to you. And that is your peek into the next installment in this series, which is other considerations when it comes to disclosing.

Coming Out Disabled Part 1

Standard

Content note: in this post I am going to refer to the process of telling someone about your disability as “coming out”. I recognize that this language refers to the LGBT community and here I am using it metaphorically to point at a similar experience to increase understanding. I also recognize that there are problems with referring to all experiences of opening up about your identity as “coming out”, however the common understanding of the language means it’s a very useful move. I’m 100% open to criticisms and would love to hear your thoughts.

This will be a multi part post due to the many factors and ways of “coming out”.

A couple of years ago, I sent my mother an email. We weren’t at a great place at the time, so it was short and sweet: “I wanted to let you know that I’ve been diagnosed with autism. I’m not sure exactly what that means, but I thought it was important for you to know. If you have any questions I’m happy to answer them.”

This is not how you should tell your family important information about yourself.

When you receive a diagnosis like autism, or another disability it’s hard to know when to tell people, how much to tell them, what words you should use. Do they even need to know at all? This is your comprehensive guide to coming out disabled.

In this first post, we’re going to talk about who and when to tell, and talk about some of the pros and cons of coming out.

Who Should I Tell and When Should I Tell Them?

For the most part this is going to be a guide to disclosing an invisible disability because when you are visibly disabled you don’t get to choose when to have these conversations. However you can use these same kinds of guidelines to decide how much to disclose and when to have conversations about accommodations.

There are a few different types of people you may want to disclose to: friends, family, coworkers, acquaintances, teachers, landlords, and romantic partners (who could fit into some of these other categories but if you’re dating you might want to consider some specific things).

The one group of people I suggest you disclose to immediately are your medical professionals because they need to know what’s up with you.

Your Goals

When it comes to everyone else here’s what I would consider: what do you hope to get by disclosing? If you’re looking at a work, housing, or school setting, disclosure typically happens when you’re looking for accommodations. If you’re really struggling and need help, I would push more strongly to disclose. For family, friends, and acquaintances, one motivation to disclose is often to ask for additional help and support, but sometimes it’s also simply because you want validation and understanding, or because you want others to understand why you behave the way you do.

You may also want to “come out” for reasons similar to LGBT folks: it’s an important part of your identity and you don’t want to feel like you’re hiding or unable to talk about the things that affect your life and those around you.

Finally, it is possible that you want to increase awareness by disclosing. This is a pretty different goal from the others, and if that’s your goal, then it seems that there are fewer barriers to you disclosing as you’re willing to put in the time and effort to educate and fight stigma. We’ll get into that a bit in the next post.

Reaching Goals

Once you have identified what you hope to get by disclosing it’s important to consider whether you think disclosing will actually allow you to reach those goals.

Let’s start with work, housing, and school. Has the institution demonstrated that they’re willing to make accommodations? Is there a policy in place? Do you often hear supervisors or professors making ableist comments, or do they show some understanding of disability? These are the kinds of questions to ask yourself. The less that an institution has demonstrated that they’re willing to make accommodations, the more likely you will have to put in a lot of time and energy to reach the goals you had in disclosing. You may still wish to disclose, but you’ll want to plan ahead for a potential fight and gather resources first (ADA citations, potentially even a lawyer).

On the other hand, if you’ve got an institution that is vocal and open about providing accommodations, you may want to disclose your diagnosis preemptively. Especially in the workplace it can be good to let HR know ahead of time that you have a diagnosis so that if and when you ask for accommodations it’s already on file.

While disclosing at work and school can be challenging, it seems to be a fairly simple calculus to me: will I receive the accommodations I want from this? Even if the accommodations aren’t formal, it may be giving your boss a heads up so that they understand your needs as an employee.

Where things get a lot more complicated is with family, friends, romantic partners, and acquaintances. In many cases, you aren’t thinking in the same “I want to achieve this goal” way, but you wouldn’t be disclosing if you didn’t think it would improve things in some way. So think a bit about what reaction you would like from the person you’re disclosing to. Do you simply want them to know more about you? Do you want them to be a support person, and if so do you have ideas or examples of how they could help? Would you like them to be someone you can vent to? Or do you want them to be more understanding of behavior that is motivated or caused by your disability?

You can then evaluate how likely it is that you’ll be able to reach each of those goals. In some cases you might know that a friend is unlikely to be sympathetic. They may have a pattern of dismissing disabilities, or maybe they’ve been very unsympathetic when you’ve asked them to change behavior in your past. You can use these kinds of questions to determine if disclosing is likely to improve your relationship with someone or hurt it. I tend to think that if you’re close enough to someone that your disability is going to affect your relationship with them, it’s good manners to let them know about it. If you feel comfortable before that, or if you have a good gut feeling about someone, go for it! Some people think there’s such a thing as disclosing too early but I’m not one of them.

On that note, let’s talk about dating.

Romantic Relationships

Most people agree that if you want to date someone in a serious fashion there is a point at which you should disclose if you’re disabled. We’ll get into the how next week, but for now let’s talk when. Honestly there is no formula. I disclosed to all potential partners before we even went on a date, but it’s true that this might scare some people away (I personally think if they can’t handle me word vomiting about my depression I don’t want to date them). However most people think somewhere between date 3 and getting exclusive/serious. Your mileage may vary.

I would suggest that if you’re at a point where you’re calling each other “boyfriend” or “girlfriend” or a similar word, and they don’t know about something that affects most parts of your life, you may have waited too long. What’s good is that this is something you can always fix! You can disclose any time! Even if it means having a conversation about why you didn’t come out earlier, it’s better than keeping it hidden forever.

Why Wouldn’t I Want to Disclose?

So why am I writing this post if all these rules are so clear (ha)? Well because there are many things that can influence people NOT to come out. If you feel an impulse not to disclose because you feel uncomfortable, that is entirely valid, and no one has a responsibility to come out. However it can be helpful to consider what is actually motivating that discomfort and whether it’s reasonable or not.

Here are a few reasons that people choose not to disclose:

You are concerned that the person you disclose to will judge you, treat you differently, or misunderstand the diagnosis. This feels really awful, especially if they invalidate it, say it’s fake or you don’t have it, or belittle you in any other way. It is possible that this can happen and if you suspect someone might do this to you if you disclose PROTECT YOURSELF. No one deserves that shit.

However it’s also possible that you’re concerned that disclosure will be a long and difficult process. This is honestly true more often than not. When you come out, it’s not enough to just say “I’m autistic”. More often than not it means educating someone about what the diagnosis is, what it means for you, how they can help, and opening a channel for communication going forward. It’s something you keep doing over time, and can end up being a lot of work. It’s 100% valid if you don’t feel you have the spoons to educate someone at any given time, however I will say that some work on the upfront can save spoons in the future, so if you have a hunch that someone just needs to learn in order to be more helpful/understanding/supportive, it might be a good idea to brainstorm when you’ll have the energy to disclose and talk to them.

It’s surprising how often people are more willing to be understanding when they understand why you’re doing something.

Finally, some people are just private. That’s ok. You don’t have to share personal information about yourself unless you want to. However I would encourage you to remember that sharing the information can be very helpful and also decrease stigma.

Why Would I Want to Disclose?

With all that it seems like there might not be reasons to disclose. We have discussed some already, like gaining accommodations and support, but there are two that I want to focus on here.

First, every time you come out, you make it easier for the next person. Every time you educate, you increase the likelihood that another person with your diagnosis will be met with empathy and understanding rather than judgment. You aren’t required to take on this work, but it’s good, fulfilling, important work if you choose to do it.

Additionally, it can be incredibly important to disclose because it makes your life easier. Sometimes it’s not right away, and sometimes it’s not even about getting more support. Sometimes it’s as simple as being able to say out loud “I’m autistic” with ease and comfort. It’s about being yourself and cutting down on the amount of time that you have to mask and hide. Forcing yourself to act in unnatural ways takes a major toll on anyone. Being open about what you’re going through and who you are, behaving in the ways that are natural to you, and feeling comfortable to let down your guard does wonders for mood and ability to take on bigger challenges.

Coming out gives you space to relax. When people are supportive of your coming out, it’s incredibly validating. The gay community has talked before about how damaging it is to someone’s identity to live in the closet. Hiding your identity hurts no matter what kind of identity it is, and all of us deserve to be seen and recognized for ourselves.

Finally, and in my opinion best, is the fact that coming out can help you find other people who are like you. By talking about my diagnosis I have made some of the best friends in my life, people who understand and who are also autistic. It takes vulnerability, but claiming the label helps you find your people.

Look forward to some scripts and ideas for how to actually come out in part 2!