This was to a friend of mine who when I first wrote it, was reaching out to others, talking about how hard things were and getting the message that all that talking about it was “too much.”

Do it anyway.

People may tell you you are “just attention-seeking.” Hell, yes, you are attention-seeking! And thank you for doing it! Saying hi is attention-seeking. Wearing a nice shirt to work is attention-seeking. We humans are a social species. That’s what we do. We want attention because it is part of connection, and we need connection. It’s literally in our genes; it is part of how our species survives from one generation to the next. We don’t all want the same kinds of attention and some of us have learned that attention is unbearably painful, but in some way or others each of us wants to be with people we love, or at least with somebody, and that involves attention.

What people mean is, they don’t like how you are seeking attention and they want you to cut it out. So, okay, ask if there are ways to reach out for connection that will serve you and the people you love better and, if there are, try to learn them and use them to replace the ones you find most problematic. But putting someone down for seeking attention is putting them down for being a mammal and it’s not fair. And people who seek attention in desperate ways are expressing desperate needs, so even if it gets to that, keep going.

Do not let people shame you out of doing the best you can to find ways to connect with other human beings including “attention-seeking behaviour”: do it anyway.

Because, yeah, we’ve talked about travel, we’ve talked about beer, we’ve talked about services, I’ve seen your pride in your home and in the recognition you have earned. And we all know people who get joy from travel or knowledge or or power or hobbies or money or achievement. But whenever I have seen you really light up, the conversation has been about people, one way or another. And whenever I have seen you expressing deep pain over something specific, the conversation has been about people, too. I get that. That’s about how it works for me as well. So keep reaching out. Even when it’s people you love and respect telling you not to, do it anyway.

There will be people who tell you to reach out, but they don’t mean to them. They mean to a professional. They will give you hotline numbers, tell you about medication, suggest counseling. Those things help some people. If you want them, pursue them. But sometimes this kind of “helpful advice” means “stop reaching out to non-professionals. Whatever you do, don’t reach out to me. Your needs are too much.”

Paid relationships, while they have value (who, on a summer day, goes into a 7-11 for a Slurpee and doesn’t value their relationship with the clerk, who would not stand there ensuring they get their cold sweet wish satisfied as an unpaid hobby?), are no substitute for chosen, reciprocal relationships. There is nothing like people who are around you just because they want to be.

Nothing.

So seek professional help if that seems like a good idea, but when it comes to not seeking connection, don’t listen. Do it anyway.

Yeah, you are going to get some well-intentioned but hurtful responses along the lines of “Settle down, things really aren’t that bad.” Discourage them, but as kindly and gently as you can, because not only they but others are watching, and the lesson some of those watchers are getting is, “It’s better not to reach out because I may make things worse.” That is not a lesson you want to teach, however unintentionally; when people reach out it is attention-seeking and we want others to feel okay about reaching back. Do your best to hear that people are uncomfortable, that they don’t know how to respond, that at least some of them are really trying to help and that’s a good thing — and let them know you appreciate that much, if you do and if you can — although also recognise that sometimes others just want you to stop, and then do it anyway.

Some people are going to say things that are helpful. For me, from people not in a position to actually make things better, which most of the time is everybody, what helps is along the lines of “Yeah, that sucks, I wish things were different.” Flag what is helpful to you. That is a big part of how people learn to do scary things they are afraid to mess up: they see it done more skillfully than they know how to do, they learn that it is more skillful, and they dare to imitate it.

So scary stuff not only has to be done, but sometimes it has to be done in front of audiences. Some people desperately want to say something helpful but they are afraid of making things worse, so they let you dangle, which makes things worse. Showing them — as kindly and gently as you can — is part of building the community you need and others need and the next generation will need, so even though it is hard, do it anyway.

People will sometimes tell you about self-help and self-care. If you’ve asked, or if it’s someone close to you, this can be an act of kindness. Otherwise, it’s usually a way of reminding you that your problems are your problems to solve. And that is not untrue. Nobody else has to be there for you. But if you want to live in a world of connection, where people reach out and reach back, if you want to strengthen that part of the culture that says we are responsible to and for each other, for yourself, for the people you love, for the people coming up after you — and from what I know of you, I believe you do — this is part of how you move slowly and almost imperceptibly toward that. I know you know this; you are a patient and generous teacher. So do it anyway.

Because you are a teacher. You are an activist, an organizer, an advocate and a community-builder. I’ve watched you do all these things and do them beautifully. Reach out, make connections, and do in in public so those who don’t have your skills or your bravery or your experience can see how to do it, too. I know you get told a lot that other people are better at things than you, and it is true that everyone you meet will be better than you at something. But when it comes to the stuff that really excites me, you are amazing. No college degree or car, no dancing lessons or polished resume, would make you a better or more beautiful person, and part of your beauty is expressed in your willingness to reach out to others, to ask for and give help. Whatever anyone says to you, do it anyway.

There will be behaviourists — maybe, because you are disabled, highly trained professionals, but certainly those who have incorporated the behaviourists’ methods into their everyday relationships — who will figure out what you love and hold it hostage until you behave the way they want. They will tell themselves, and you, and anyone who will listen, that this is for your own good. I know you know better. It’s control. It’s abuse.

Anyone has the right to not go out of their way for you; nobody has the right to use that fact to control you. You never have to accept abuse. Never. People will tell you you should. People can be f***heads. That said, it can be hard to keep reaching out in the face of having been abused, but please, do it anyway.

There will be times when people convey that whatever you are having a hard time with really isn’t that upsetting. It wouldn’t upset them, they think (sometimes they are right, sometimes they are clueless, and sometimes they are lying). Or others have gone through, and seemed to handle, worse (so what? It’s not a contest. And they may not have been coping. They may just not have been reaching out).

But there is no objective scale for what upsets us. I’ve watched people absolutely thrive in situations I could never handle, I’ve coped with things that almost everyone thinks are intolerable and completely lost it in situations nobody else seems to mind, and I’ve watched people crumble in situations that gave me joy. It’s not anyone else’s place to judge the worthiness of your pain or tell you when it isn’t okay to reach out to others about it. Let them have their say — you can’t stop them — but ignore them and do it anyway.

When there are people who could help, a lot of them won’t. Some that you think could help really can’t, in ways that may not be obvious. If you love someone, try to understand who they really are, what they really can and can’t do, the ways that what they can’t do are inextricably linked to the best things about them, and try not to get angry that they aren’t who they aren’t, because that’s not love. But some people are making choices. They have a right to do that, as much as it hurts.

Not asking for help is a failing of mine. As long as I don’t ask for what I need, I can pretend that if I did ask, I would get it. And there are days that I need that fantasy. But I also need what I am not asking for, and if nobody knows, I definitely can’t have it. So take a deep breath, risk the fantasy, and do it anyway.

You’re going to hurt people and they’re going to hurt you back. There is really no way to be around other people without it being a bruising experience for everyone some of the time. That’s in the nature of fallible humanity. Hurting someone by accident or in some other ways is not the same as being an abuser. Being hurt is not the same as being abused. (But you also don’t owe it to anyone to stick around for pain you don’t want, even if it is not caused by abuse. They don’t have to deserve to be left for you to deserve to be able to leave.)

Listen to this stuff and ask yourself if it’s true. It is certainly possible to cross the line and hurt someone, and I know you don’t want to do that. And anyone else has the right to say, “I don’t want to be around you” over anything at all. But that doesn’t mean that who you are is not okay. So respect what other people want and need in their own lives. Ask for what you need, but don’t demand from someone what they won’t freely give. Social media is amazing for this because it relieves people from individual responsibility; you can say what you have to say and other people can choose to take a break from hearing it. But no matter how much people are telling you that good manners or health or the rules of a civilised society require you to stop trying to connect with other people, do it anyway.

Also, some people really don’t want to hear this stuff. Some people need not to. Be thoughtful about that. When you learn that about someone, don’t make them hear it. But don’t let other people’s general discomfort stop you, either. Some people will try to police you: they’ll tell you you are inappropriate or even toxic, that you have to stop so they can have healthy boundaries, that you are a bully.

People are going to tell you to be more grateful and remind you of the good things in life. As hard as it is to be told to be grateful when you are in pain, there’s a kernel of truth to it. Good things happen, and noticing and acknowledging them does help. The ability to be in the presence of people who matter to me, to joke around with them, to be a part of something meaningful, to do work I value — these are real gifts and I treasure them. Express your gratitude as best you can, because the people who give you these gifts should get reached back to. But don’t try to force gratitude. Pain counts, too, and if it is not visible people cannot connect with you in those moments. So when you want or need to express your pain, even though people will point out that pain is not (or in their opinion should not be) all there is, do it anyway.

There are going to be days when you want to walk away from it all and take a break from other people. And that is okay, if you are doing it for you. There are going to be days when you want to give the people you love a break from the discomfort of being around you. And that is okay, too, as long as it’s temporary and really based in an assessment of their needs. It’s the overall shape of things that counts. If you stop reaching out altogether, other people stop reaching back. If you stop being honest, you lose that ability to connect. And that kind of cut-all-ties withdrawal that seems in the moment to make sense does not work long-term. So know yourself. Sometimes when you don’t want to reach out, let yourself off the hook. Sometimes, do it anyway.

It is only by showing up and reaching out, by opening yourself up to the possibility of real pain, that you lay the groundwork for connection-based joy. And you never know when those moments are going to come. You may be freezing your ass off in some park somewhere when someone you deeply respect takes one of your suggestions seriously. You may be in someone’s office when they ask you to do something that is easy for you and hard for them. Someone may tell you they trust you to do a job that you know is important. You may be in an ER QR someone stuck you in because you couldn’t cope in the last place they had you, even with your eyes shut, trying to control the rising panic and not bolt because you know you need not to, when the person with you (note that oppportunity for gratitude) sucks you into a ridiculous discussion about someone’s duct-taped, disintegrating wheelchair tyre and you find yourself laughing. You may be in a parking lot with friends listening to someone’s hilarious story of trying to figure out the worst pack of boxer shorts he ever encountered. You may be in a place where you are supposed to have your game face on, trying like hell not to laugh at a private joke with the person next to you. You may be in a hotel lobby learning you don’t have a room when someone you admire shows up, supports you, and goes with you for a burger, a beer, and an epic conversation. If you reach out, you get hurt a lot. But if you don’t reach out, you don’t get those joys, so do it anyway.

Some people are going to get overwhelmed by you and walk away, and that’s going to hurt so much. It hurts to be given up on. Especially when it is someone you really, really love. And I know enough about how people with your disability get treated to bet you have experience with that pain. When you have something that really matters to you, there is incredible risk. You can lose it. It can be weaponised against you. For some of us, that is a never-ending experience. The only relationships of mine that ever last involve a whole lot of distance and non-contact; people like me sometimes, but nobody likes me for very long, and that is almost unbearable knowkedge to live with. You learn to hide and hoard what matters to you. I’ve certainly learned to act as if I barely notice the people I want to know, and not to trust signs that they may want to know me, too. You can do that with a lot of things. But love doesn’t work like that. There’s no way to do it right, to give or receive it, without risk. Without unbelievable risk. You have to force yourself to take the risk. There is no way not to get hurt.

Love is a contact sport, played without protective gear. So as terrifying as it is to try over and over to connect with those whom, right now, today, you love and who love you back, and those whom you might love or be loved by, do it anyway.

And there are going to be times when you fuck it all up and you just want to hide. It is hard to be human. Do it anyway.

Here’s the thing. At any given moment there are reasons not to reach out. And sometimes those reasons will be enough and that is okay. I’m not going to tell you when or or how often to whom or how to keep reaching out. Those are personal decisions and different people should make different ones. I’m just saying, there are always reasons not to, and other people will remind you of them, because you reaching out is uncomfortable for most people. They may want to fix it but be unable to. They may want to help but not know how. They may not want to know what you are going through — and some legitimately need to not know about it. They may feel pressured to do something they don’t want to do. It may offend their sense of propriety. They may be subtle; they may be direct. You are going to get hurt worse. DO IT ANYWAY. As much as you need to, and sometimes just because you can.

Because the cost of not doing it is higher.

I know you know this. I know what a soul-destroying price I paid for extended and total denial of human connection, and I know the one you paid was steeper and younger. But I also know you are hearing from people who are well-meaning but haven’t thought through what they are asking of you, and I wanted you to to hear from someone who has.

Your best move in the moment is not always your best move. Because it is never just the one moment. Moments lead to other moments lead to still other moments. They mean something. A life emerges. It means something. It means a lot.

I am sorry things are so hard right now. You deserve better. I wish I knew a way to help, but I don’t. I hope the unsolicited advice hasn’t made things worse. I wish you were happier, but I am glad you are telling us how things are. I hope they get better soon, but until they do, thank you for reaching out and telling us.

And thank you for being you.

For Mel Baggs and Phil Smith, who knew, and know, communion with the wild places better than I can imagine.

Do you remember how you learned to communicate? If you communicate pretty typically, odds are it wasn’t perfect, but it included something like: you reached out socially, and people reached back.

You looked at them; they gazed adoringly back at you.

You smiled; they smiled back and waved. “Hi, Baby! Hi! Oh, what a beautiful face!”

You laughed; they reveled in your chortles and giggles and were silly in the hope that you would laugh again.

You cried; they held you and comforted you and tried to figure out what was making you miserable.

You called out at night; they pulled themselves out of exhausted slumber, scooped you up, and blearily cuddled and fed you.

You made a sound or a gesture, an approximation of standard meaning — or they convinced themselves of that, anyway — they pounced on that and talked back to you. “That’s right! Ma-ma! You know who your mama is! Can you say it again?”

They celebrated your efforts to engage, amplified them, reflected them, and worked to understand them.

The first tendrils of what would eventually grow to be a robust, redundant, and resilient communication system peeked out of you, questing for the sun of human connection and they, who reveled in what developed, with consummate faith in the richness of the soil those tendrils came from, watered and fertilized them; and between you, the communication system bloomed and blossomed into a strong and supple living thing.

You were human: the development of an adaptive and functional communication system was a drive. Once you knew how to communicate with people close by, those who knew you best, you gradually became better and better at communicating with others.

Through communication, you developed — to a greater or lesser degree — the ability to connect with others. And because you were human that, too, was a drive. It probably has been thwarted to at least some extent, just as there are people among whom you feel unheard, or who make you feel unable to understand. But also, you know you can.

Or maybe it wasn’t so easy or so joyous. Maybe the soil was too thin, or the rain too sparse, or the sunlight too filtered. Maybe those who should have nurtured you did not, for reasons within or beyond their control. Maybe the communication system grew slowly. Maybe it bore the signs of hard growth. But again, if you communicate pretty typically, then probably, between whatever you did have and human instinct, those hardy tendrils, doggedly found a way. Communication, connection, after all, is a human drive, and you were, you are, human.

And sure, there are times when you feel lonely, and times when you struggle to express what you want to say, when the living thing between you and others seems battered and bedraggled, beset by drought, but the fundamental ability to engage in human give-and-take is there, waiting, like a cactus, for the rare and precious rain.

But now imagine if your reaching-out is misunderstood or unnoticed, if it is ignored or even discouraged. Imagine if, instead of being showered, or at least drizzled, with nutrients, it is sprayed with pesticide, or even torn out at the roots. Imagine if someone else, like a landscaper who has been educated by those who cultivate formal gardens, decides how you should communucate, and then enforces that decision, stamping out whatever errant shoots creep out of you, and which she sees as weeds. Imagine if your communication system, instead of growing in fertile ground, is constructed in a lab and forcibly buried in you in place of what was already growing but fervently opposed. Imagine if your efforts to communicate and connect — because it is all one thing — elicit not excited reciprocity but measurement, evaluation, strict weeding, and control.

I’m not saying text-based AAC is better than grid-based. I’m not saying any kind of chunk of a communication system is better than any other kind of chunk. I’m not saying to push for that instead of this. I’m saying that a communication system must be one that takes root in the ground where it will live, and that allows for the fullest expression possible of what the ground already contains.

As much as I completely understand the terror a parent feels when they look into the future and cannot imagine what communication is going to look like, as much as I completely understand the hope that a professional seems to offer, who has with a system for forcing the approximation of that which the parent has come to expect natural growth to look like, it’s the wrong choice.

A fear-and-control-based approach to human connection is wrong. You can’t make connection that way. It has to be organic. And yes, there is a time to prune, a time to tell your child not to comment on other people’s bodies, a time to coach your teen in the art of the handshake rather than the hug, a time to mark the trails that those who are welcomed in will follow, but the more tender the shoots of the communication system, the riskier that pruning is.

I am saying when you plan in advance how someone else will communicate, you plan what they will communicate, and then it ceases to be communication. When you enforce a particular way of communication and relentlessly prune anything that does not meet your standards, then what should have become, perhaps, a powerful redwood is trained into a bonsai instead; and a bonsai, however artistically presented, cannot do the work of a tree that has grown as its own nature commanded it. What should have been, perhaps, sorrel, harassed by the controlling landscaper because it is not the violets she wishes it to be, will have leaves so damaged that they cannot absorb the sunshine of connection. And when the landscaper beams at the parents and proclaims, “Nothing worthwhile would have grown here without my efforts, so celebrate this withered stem I have coaxed from earth that was once overrun by weeds!” it is cause for grief, not gratitude.

You may have wanted tulips, and by all means, bury a bulb or two and see what comes up in the Spring, but if the absence of tulips is all that you can think about, you may miss the sweetness of honeysuckle.

The ADA represents a shining promise: that never again will someone’s disability be used as an excuse to deny them full participation in their communities. As such, it is a piece of the bigger promise: of a society in which who we are is never weaponised against us.

But the ADA represents a hollow promise. It was never meant for all of us. It was always intended to protect some disabled more than others, and still other disabled not at all. And the independent living movement, which plays an enormous role in cross-disability agenda setting, has focused on the kind of “one and done” accessibility that is coded into the ADA Accessibility Guidelines (ADAAG) (and even then only some people’s “one and done” needs are addressed) rather than the ongoing work of negotiating the fluctuating and complex access needs of individuals, groups, and communities.

The question, then, for those of us disenfranchised within the disability community in one or more ways, as we approach ADA30, is what to do about the discrepancy between that shining promise and the tawdry refusal to take it seriously on the part of much of our leadership.

Do we continue to call on them, after decades of betrayal, to finally live up to their stated values? Or do we accept that decades of treating some community members as people who do not deserve full participation in our society is an expression of their real values, and refuse to cooperate further with them?

I do not ordinarily participate in the ADA commemorative events. I am trans, queer, and autistic. I have a low IQ score. I come from a family with an intergenerational history of substance abuse. I have been nonspeaking much of my adult life, and am partially speaking now. I am a SIBber and a psych survivor. I am under no impression that the ADA was meant for me, and if I ever had been, I have sat through enough lectures from framers to have been disabused of that heady notion. When I fought alongside the white crips who were horrified that passage of HR 620 in the last Congress might mean that they had to wait a few months for access, they did not turn around and agree that I should not have to wait for decades. I did not expect them to. They took their victory and continued to see me and my subcommunity and other subcommunities as undeserving of what is nonnegotiable for them. It was still the right thing for me to do, to fight the attack on what we have built; the right thing for them to do would have been to finally agree that what is nonnegotiable for them cannot be unimaginable for us.

I can acknowledge the effort the Eds and Judys and Justins and Evans put in; I can acknowledge their substantial achievements; I can admire and even love them as people. But I cannot ignore the relative privilege that permitted them the opportunities they used so well, and I cannot overlook that a movement they had so much influence over excluded so many from making any contribution, erased so many who did make a contribution, and continues to do so.

I believe in the promise of the ADA. I believe in the promise of justice for all marginalized groups. I believe we can get there. But I also believe it will take not just hard work and commitment, but revolutionary change within our movement (I will not presume to suggest I know what other movements need to do). So I will not mark ADA30 by celebrating the glorious history of white wheelchair users. We celebrate that glorious history every day, and too few of us peek behind the curtain.

I will, instead, celebrate the movement that Brad Lomax tried to build, the one that Bernard Carabello devoted his career to, the one Lois Curtis should have inspired, the one that incorporated Roland Johnson’s insights, the one that took seriously Mel Baggs’ ethical efforts. I will celebrate a movement in which I am neither more nor less human than the next person on the line, in which residents of no one institutional system take priority while residents of others languish, abandoned to their fates, and that therefore has the moral force to demand that the larger society remake itself in a similar way. I will celebrate ADA30 by celebrating the shining promise of a just future, and the dream of a movement that can deliver that promise to us — and then I will return to the tawdry reality and continue to try to build toward the dream by creating the movement that the Brads and Bernards and Loises and Rolands and Mels of today are working toward. And I will hope that the excellence of these activists and advocates will overcome the mediocrity of the movement they are inheriting. I have met some of these activists and advocates. There is reason to hope.

I hope that, however you choose to celebrate ADA30, it is a good celebration and that it nourishes you as you recommit to the long struggle toward a just world.

There is a highly successful program called Money Follows the Person, which helps transition people from large institutions to home and community-based settings. The multiyear authorization expired and Congress is only trickling money into it to barely keep it going but the data show the value of getting people out of big facilities and back into small community-based facilities (which are still congregate and not enough) or their own homes.

Living in a congregate (grouped) setting is a rough life at the best of times, even with skilled, caring staff doing their best, because the realities of mass-produced care force restrictions on personal liberties, self-determination, community integratiom, and so on. And at worst, we get truly horrific outcomes, rife with abuse and neglect.

Lois Curtis, for instance, who went to the Supreme Court for us as the lead plaintiff in the Olmstead case 21 years ago, has talked about what winning her case and getting out has meant to her.

The memoir of disability rights leader Roland Johnson, who grew up in the infamous Pennhurst, is also powerful.

There’s a film about some Canadians’ efforts to free themselves from congregate settings, called Hope Is Not a Plan, that I strongly recommend.

I have done time long-term in the psych system and short-term in the nursing facility system, and I’ve worked in the DD system. I’ve got experience with poorly- and well-funded programs, with programs that had nakedly abusive staff and ones with great staff. Some parts of these systems are absolutely better than others, and none of it is good.

And it gets worse. In late 2018, 11 children died in an adenovirus outbreak at a nursing home in Wanaque, NJ because of the kind of lousy infection controls that we see over and over in these facilities.

And then came COVID-19 . And the carnage has been staggering.

It has been overwhelming in nursing facilities.

It has been overwhelming in psych facilities.

It has been overwhelming in the developmental disability system.

It has struck our elders, our disabled adults, and our children with disabilities.

Nor has it struck evenhandedly. The preexisting effects of structural racism means that people in nursing homes with primarily Black and Latinx residents are substantially more at risk than those in nursing homes with primarily white residents.

This isn’t just about disability-specific congregate settings, either. We’re seeing that prisons, jails, detention facilities, and college dorms can be impossible places to be safe in a pandemic, too.

So how do disabled people end up in congregate settings? If they need long-term services and supports (LTSS), there is something called “the institutional bias,” a set of structures that mean a lot more people end up in large facilities than would if it were truly up to them. In particular, state Medicaid programs have to pay for institutional care for recipients with a certain level of support, but don’t have to offer those same supports in the community. So some people get home and community-based services (HCBS) through a waiver. Most don’t.

And we have been fighting this one a long, long time, folks. Katie Beckett came home in 1981 at the age of 3 after President Reagan created a waiver for her; and because she had that waiver, she had a good life.

For short-termers, there is a hospital to rehab (often the same facilities LTSS residents are in) track. I have been hospitalized recently, and I was strongly pressured to enter one. After this story came out tying 44% of Illinois COVID-19 deaths to nursing facilities (I am in Illinois), I was confronted by administrators from Northwestern Memorial Hospital accusing me of being “hurtful” to suggest it wasn’t “perfectly safe” for me to enter one. A Rush Medical Center employee insisted the data isn’t in yet on whether the facilities pose risks. People don’t even have the information, much less the material resources, to protect themselves.

And I overheard patients — mostly older Black patients whose families were on the phone every single day talked into shoddy facilities with active infections. In one case the facility had recently been in the news for running out of disinfectant. I have no doubt the front-line staff were desperately trying to protect everyone. But the impact of the realities we are addressing overpowers those good intentions.

You know what happens to some of the folks who get placed in these facilities because “there’s no-one to stay with you at home”? What happened to Senator Elizabeth Warren’s brother. (Spoiler alert: he’s dead.)

How many lives could we save, how many lives could we improve, how many opportunities could we offer, how many communities could we strengthen, if we did what we know we can do — and can do not just for some of disabled people, but for every single one (nobody is “too disabled” to live successfully in the community so long as they have adequate supports)? A lot. I don’t have an exact number, but a damned lot.

We could raise kids like the ones at Wanaque, and like Roland Johnson, at home. We could give them lives so much closer to what Katie Beckett had. We could give the Lois Curtises the kind of life that let her become a successful artist. We could let elders age with people they know and trust love. We could protect people after health crises and let them die at home.

And we can do this. We can do this. We can establish a right to home and community-based services for everyone who has an entitlement to institutional care. We can build the accessible, affordable, integrated housing. We can train and pay personal care attendants and direct support professionals well, both people who do it professionally and people who do it for family members. We can abolish guardianship and agency control in favor of options like supported decision-making and microboards. We can fund the kind of community mental health services that people want and need. We can learn more about promoting self-determination, and put what we learn into practice. We can improve protections for people at risk of going in, and permanently reauthorize Money Follows the Person to help those who are already in and want to get out. For families who want to stay together, we can support that, and we can offer adequate help for those who want to strike out on their own. We can do it all, if only we solidify the national will to do it.

We can say “No more Wanaques” and not plunge ourselves into a situation thousands of times worse within a year and a half. We can say “Every child deserves to grow up in a family” and mean it this time. We can keep our elders, surrounded by support, in the communities that matter to them. We can change everything for disabled people who have signigicant support needs. We can finally learn the lessons of Willowbrook and Pennhurst — that these facilities have a life cycle and no matter what your intentions they are still congregate institutional settings with all that entails — and we can move on to something better.

We can’t undo the ravages of COVID-19 that we have already permitted to be visited on those in congregate care, but we can do better for the survivors and for those coming after them.

And we must. We must. Because these are our people.

p.s. If you want to contact your Senators and Representatives in Washington, D.C., and let them know how important this is to you, here is a good place to start. Scroll down.

opaque (adj) – (1) not transparent or translucent; impenetrable to light; not allowing light to pass through, (2) hard to understand or explain

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The Mystery of the Squirrels

When I was 4, we moved to Canberra. On (some? all? I don’t remember) Sunday mornings, we called my grandmother in Dallas.

This, for those of you in the internet generation, was a really big deal. I don’t remember any other intercontinental phone calls from my childhood. You had something to say to someone on another continent — and my dad’s job requirements meant my parents often did — you got some of this really flimsy lightweight blue airmail paper and you wrote out whatever you had to say in your most squinched-up handwriting on both sides to save money and then you put it in this little Por Avion envelope and paid more in postage than you thought reasonable so it didn’t go surface mail (surface mail meant by ship, and it took long enough that when I was in Prague (we ate Australian food in Canberra), killing the weevil infestation in my food was the first step of eating many many meals and snacks involving American food, all of which got to Europe by surface. I do not like food with weevils in it to this day) and they wouldn’t die of old age before it got to them.

Anyway. My dad really liked his mom a whole lot and she spent a lot of time pretty much unable to leave her home, just sitting there and watching what went on in her back yard (the implications of this, as you will see, were lost on me until much later), so she got phone calls. My other grandmother had the cash to come out every few years, see us, drink a lot of gin, and show off her latest fur coat. So she just got letters in between episodes of freaking me out. Yeah, I have reached the age where “the olden days” didn’t all happen before I was born any more. But I digress.

At some point in there, I asked my dad why we had to call my grandmother so early, and he explained that although we called her early, she did not receive the call until much later in the day. Now, by the time I was 4 I had a very battered (so obviously much-used, but in fairness sometimes used for football (soccer) rather than geography) world globe. I understood that the world was round and that it both rotated and revolved, and that noon was when the sun was high up above, but I had not yet extrapolated well enough to have sorted out time zones. (I would figure that out a little better on a surface trip across the International Date Line when I was 6. I would also get thrown into a pool by a temporary devotee of Poseidon to celebrate the event. Learning about the world is not risk-free and sometimes requires a change of clothes.) The fact that the same moment occurs at one time in Canberra and at a totally different time or even on a different day in Dallas was utterly opaque to me.

So as I puzzled out how we could be talking to Grandmother at a different time than she was talking to us, it occurred to me that perhaps this was related to the fact that the only bloody thing the woman ever talked about was the squirrels in her back yard. At that time the children I knew mostly talked about things like their decision to never invite me to their houses, but the men I knew talked about the geopolitical situation, which had its boring moments, but which I found a lot more interesting than a group of squirrels in Texas. (I never had a clue what the women were going on about. This is not a fact about my relationships with men and women or a judgment about the conversation of housewives, which most of those particular women were. It is a fact about my complete inability to understand my mother, who was my conduit to the conversations among women, and my partial ability to understand my father, who was my conduit to the conversations among men.)

The conclusion I came to was that the telephone had the ability to predict what my grandmother was going to say a few hours later, but it really could only do that if she stuck to very very basic topics. And thus we had to discuss squirrels. Faced with this sad yet apparently immutable limitation of the predictive telephone technology, I listened to her stories of fights at the bird feeder and chases through trees as patiently as I could, produced a requisite sentence or two about my life, told her I loved her (I did not have a very clear sense of who she was, as I was 6 before my mother explained human reproduction, and I did not have an emotional tie to her yet at all, as I reliably saw her briefly every 2 years from my birth until her death, but I was a lot more pliable at 4 than I am now and, all evidence to the contrary, I don’t actually enjoy making other people feel bad), and went about my business.

Grandmother talked about squirrels during the whole time I knew her. For the record, I wish I had learned to hear the non-explicit content in her conversation, the isolation, the boredom, the loneliness, the repeated efforts to connect with her distant grandchildren the way she did with the ones near her, before she died. I have the impression that I would have liked her a lot if I had known how to connect. And she loved me; she spent real care showing me that.

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Protective Opacity

One of the earliest lessons I learned was to hide everything important. The best phrasing I have for it is preserved as echolalia from some book dealing in some way with terrorism (I don’t recall the details) I read when I was 8, in DC, while my father was in Czech language training. “No man is strong who is weak for someone weak.” But I knew that long before. My mother took my baby blanket because it mattered too much to me. She slathered my thumb with something foul-tasting because it was a source of comfort, and then when I hid behind the couch to soothe myself anyway she escalated. She took my stuffed animal. She took a dog. She took what I liked to read, the clothes that felt good on my body. She took my relationships with my siblings, my cousins, my aunts. She delighted in institutionalizing me. My mother once — after my grandmother’s death — smashed the frame of my father’s favorite photo of her during an argument. She once created a sitution that forced friends of hers to flee their home with their children in fear. She used what other people loved against them, too. But as far as I can tell, I was her favorite target.

Most of what I loved, what made me feel safe, disappeared regularly anyway. That is the life of a child who moves a lot. There is nothing you can do about that except to do your best not to love what cannot be trusted. But some things I could protect to some degree by hiding how I felt … and later, as it became clear what the proliferation of unspoken but rigorously enforced apparently random social rules meant for me, I learned to get the opportunity to be around the people who were important to me by being as useful to them as possible while studiously pretending I did not care that they were there.

And then came institutionalization, where the slightest hint of connection to another person meant punishment for you and them. And then came the long years of exile, when again I forced myself not to love, that I might survive.

I was always opaque to other people, as they were to me. More so, I suspect, than many people are opaque to each other — though the old AA slogan “Don’t compare your insides to other people’s outsides” tells me it is a more universal experience than the professional literature of those with the dominant neurotype about the minds they try to deny would suggest. I learned to strengthen and fortify that opacity as a way to protect myself. I learned that opacity was a key to survival. To emotional survival every day, and to physical survival all too often.

It amazes me when I see people who just casually tell people they love them, or whose affections are visible, who display their attachments as if they are nothing. I wonder if that casualness is an act. I wonder if they understand the beauty of it. I wonder if the terror of ostracism runs deep and they simply are very brave, or if it ever is as effortless as it looks. It took me a long time to learn to see any but the most verbal and explicit of these expressions, but I watch as many as I can see, and I force myself to try to copy them. Panic every time. I can still almost never force myself to initiate touching another human being, even when I know intellectually it would be welcome, no matter how much I want to. Casual touch between friends fascinates me. Maybe I will get there. I choose as much as I can not to live according to many the rules experience has taught me are necessary for survival, and it’s much better, but that doesn’t mean it doesn’t still feel like careening toward disaster.

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Personal Symbol-Sets

People keep souvenirs. Mementoes. Symbols of things that are important to them. If you are a traveler you may have a snow globe from a city you loved. If you are a serial killer it may be a victim’s bracelet. If you are a parent it may be your child’s first pair of shoes.

But the souvenirs are clues to what matters, and as symbols they come to matter in themselves. (In a psychology class once we were told of an experiment in which students were asked to bring photos of their mothers to class … and then asked to gouge the eyes out of the photos. Photos (in those days) were pieces of colored cardboard. Gouging the eyes out of a photo hurts no-one. It is purely symbolic. But the people who could do it were considered pathological.)

Between the fact that other people can rarely predict what connections I am going to make between things (though they can often follow them once they are explained) and the fact that I prefer them not to paint targets on things that matter, the souvenirs I collect are often opaque to other people. And I learned to hide them deeper, at the ends of long chains of connections.

Here is an example with short chains. I have some bowls out of which I eat. Some are blue and some are orange. I don’t like the color orange, really, but I bought orange bowls on purpose. If you gave me grey bowls to add to the stack, I would thank you for your kindness set them aside, although I love grey. (If I really like you, I might find a different purpose for them.)

I assume that makes no sense to you. Why would anyone reject bowls in a color they like, in favor of bowls in a color they don’t? They aren’t an inheritance or gift. I bought them. And that is fine. The opacity of my fondness for these specific bowls is fine. You don’t have to know or care why it matters to me. If you do care, I don’t have to tell you. If I want to, you don’t have to listen.

But I have reasons. There are two chains of associations that mean those bowls are, for me, souvenirs of things from far enough back that every contemporaneous souvenir of the thing was taken from me.

First, the blue/orange combination reminds me of a Joe Penhall play that I put the effort into reading. (Plays are hard. They are like novels, which are also hard, but with all the bits that cue me into what is happening stripped out. I don’t read a lot of plays now that the advantage of a tiny book that I will not be able finish within 50 hours of reading has been canceled out by portable e-text. In fairness I didn’t read that many before, but I read even fewer.) And the Penhall play reminds me of specific people in my past.

Second, even though the shade of blue is wrong, the blue/orange combination reminds me of the covers of current editions of some books that are reprints of books I read in editions with dark and light green covers, and those books remind me of the 18 months of my life when I could imagine a future for myself that involved a career I loved and being surrounded by people I loved, and which I wanted.

So no, more bowls might be convenient, but that convenience would not be worth the loss of the reminder of valued relationships that the sight of a stack of blue and orange bowls gives me.

People think and feel. Everybody does. They make connections and they use symbols. Their communication, their emotional states and their symbol-sets may be so opaque to you that you have no sense that they exist, but they do. And if you go from “I can’t see it” to “It doesn’t exist,” and build your relationship on a default presumption that there is nothing there, you get so much wrong.

A professional is capable of looking at my insistence on the bowls being blue and orange and diagnosing a pathological rigid insistence on sameness. (I’m an activist. If I have a pathological rigid insistence on something, it’s more likely to be the unsatisfactory nature of certain samenesses.) The prescription? Force change that upsets me, to teach me to tolerate change.

A professional is capable of looking at my (in reality hypothetical) failure to use a gift of grey bowls and diagnosing a pathological absence of “socially relevant behavior.” (This is seeing the situation only from the perspective of the gift-giver. I have a perspective, too, and social interaction is a two-way thing.) The prescription? Train me to display behavior that validates the giver.

A professional is capable of looking at my attachment to this stack of bowls and diagnosing a pathological indifference to other people demonstrated by a preference for things. (My attachment to a stack of bowls displays my attachment to other people.) The prescription? Teach me to forego expressions of what matters to me in favor of empty ritualistic behavior that others find reassuring.

There is nothing wrong with people finding various things opaque, and I’d be a hypocrite to tell you otherwise. I have melted down, recently, with people who work their asses off to include me, over the sheer opacity of “our” conversations. What’s wrong is the assumption that because you cannot perceive the humanity in a person, it isn’t there.

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7 Lost Years

For almost the entire time we were both alive, I missed Grandmother’s efforts to connect with me. I did not see them. This wasn’t just because I didn’t understand time zones or because I did not yet understand how extended isolation saps the ability to connect. I’m not good at picking up on this stuff. It has taken years of effort to learn, and I still tend to need to concentrate. Part of that is the communication chasm that comes with efforts to signal, and receive signals, across radical neurotype differences, and a lot is the many times it was driven home to me that nobody would ever want to connect with someone like me anyway. (Now, think of the effect it has on autistic children that everyone around them is socialized as hard as they are to think autistics are defective in the area of social reciprocity.)

It wasn’t just the time zones. There was so much more going on than just the time zones. There was the fact that I was struggling to connect even with the people I spent hours and hours with, and I was having 60-second phone chats with my grandmother at most once a week. And even if it had been the time zones, I was 4. The ethical issues involved were far too complex to expect a 4-year-old to work out by himself.

But here’s the thing: I was asking the right question. “Why is this woman who wants to talk to me constantly telling me about squirrels?” And when confronted by the impenetrable opacity of a basic fact about the world, and my failure to grasp what I didn’t know, I came up with an explanation that covered all the known facts, and then I stopped asking for 7 years.

I regret those 7 lost years

That pattern is not limited to 4-year-olds. People enact it all the time through their whole lives. Moreover, at a certain point, in certain contexts, when enacted by people with power over others’ lives, it becomes an ethical failing, because it predictably and reliably hurts people.

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A Fact About the World

Here is a fact about the world: everybody thinks, everybody feels, everybody makes connections, and everybody uses symbols. Here is another fact about the world: when someone thinks, feels, makes connections, and uses symbols and you treat them as if they don’t, you harm them.

This is the moment in the conversation where the university-ordained and self-proclaimed disability experts start lecturing me. “…not like my child…” – A Parent. “…unethical to assume…” – A Bickba. “…theory of mind deficits…” – A Researcher. “…functioning level is: breathing…” – A Professional. “…no mind at all…” – An ADAPTer. “…parents have a different perspective…” – A CIL Staffer. “…no place in disability rights…” – A National-Level Independent Living Leader.

Then if I stick to my guns sometimes there is a pause for some saccharine ablesplaining. “Cal, you need to understand, not everyone is like you.”

Then if I stick to my guns the accusations begin. “Stop assuming things about me.” “You would do the same thing.” “You just want to hurt people.” “You don’t care about anyone but yourself.”

Then if I stick to my guns they start the name-calling. “You are inappropriate … bitter … disgusting … hateful … a troll … a bully … unacceptable.”

You know what? Here is a fact about the world: everybody thinks, everybody feels, everybody makes connections, and everybody uses symbols. Here is another fact about the world: when someone thinks, feels, makes connections, and uses symbols and you treat them as if they don’t, you harm them.

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Weaponising Simon’s Humanity Against Him

I once knew a man I will call Simon. I worked in his group home.

Simon had about a 6-word spoken vocabulary and no signs. No line drawing vocabulary. No object exchange vocabulary. No AAC of any kind.

One of his words was “ho-ho.” It meant Santa. Another was “bip,” probably derived from “bitch,” and it expressed an attitude of humorous insolence or angry defiance. (Simon was freaking awesome. This fact somehow seemed to elude most people.) And then there was “Kenny,” pronounced “Keeeeeeehhnnnnnnny” in a voice quavering with emotion and with lots of hand-flapping.

I like classic country. I used to like some Kenny Rogers songs. Knowing Simon burned me out on Kenny Rogers. He was enough of an enthusiast that his stereo was padlocked into a box to prevent him smashing it (again) in his excitement at the mere thought of listening to The Gambler. You could cheer him up for hours by leaning over and whispering, “You picked a fine time to leave me, Lucille.” When we would go places, which was not an entirely relaxing thing to do because Simon was an extremely energetic man, I would take photocopies of photos of Kenny Rogers to hand him, to buy a few seconds of standing still until he could not bear the joy and was forced to shred the paper into confetti. During the time I knew Simon, I listened to every Kenny Rogers song there is more times than I could bear, except Ruby, Don’t Take Your Love To Town, because Simon had nonspeaking housemates I could not communicate effectively with, and I have an ethical objection to playing that song for disabled people without their consent, and he never seemed to miss it. I just made him mix tapes of everything else and played those.

Simon was on behavior plans at all times. Because the thing that he loved most that staff could control was Kenny Rogers music, it was supposed to be tightly regulated. Do these 9 things in sequence without doing any of those 14 things (all but impossible for him), one side of one tape, often shortened to one song. It was a point of real tension.

“Too bad, Simon, you lose Kenny for this shift.”

“Bip!”

(Tell me again how group homes are not institutions?)

One day, when Simon’s family came to take him out, something that they did very infrequently (there was a learning curve to enjoying Simon’s company in public and he had grown up in a state school, so although they loved him, I don’t think they found their time with him very comfortable) and also something Simon loved beyond measure, I learned something important: ever since Simon had been institutionalized as a small child, whenever his beloved parents had come to see him and take him out, they had played Kenny Rogers songs for him in the car stereo.

Simon didn’t really speak. I don’t know how much language he understood, or to what extent he followed staff commands because he could read body language or gesture. He was not included in much conversation: most of the language addressed to him was “prompts.” I did not know how to communicate effectively with him. I do know he thought. He felt. He loved. He got angry. He made connections. He used symbols to evoke positive memories. And in failing to see that, to see him as human, to see him as their moral equal, in hijacking his most valued known symbol and using it to control him, the disability experts who designed and implemented the institutional system he was trapped in did him real harm.

In seeing people like Simon as in need of supervision rather than support, as in need of external control rather than self-determination, in trying to be their voice rather than their megaphone, many “advocates” do them harm, too. And it is especially distressing when it comes from disabled people who would fight like hell to stop anyone doing the same thing to them.

Assume humanity.