By her own admission being autistic does not limit you, it just requires ‘the right circumstances’ – but it can be hard to find those environments if you don’t have a diagnosis and know about your condition. In my own experience, diagnosis has not limited me, it freed me. Ableism, in its many forms, is what limits me.
Our movement, however, needs nothing of respectability politics. Accepting — conceding, surrendering, submitting to — that will only erode our movement until it crumbles entirely. Respectability politics is what’s gotten us into reliance on foundations and nonprofits, and elected officials and bureaucrats, and policies and programs that only benefit the most privileged and resourced members of our communities at the direct expense of the most marginalized. Radical, militant anger — and radical, militant hope, and radical, wild dreams, and radical, active love — that’s what’ll get us past the death machines of ableism and capitalism and white supremacy and laws and institutions working overtime to kill us.
Why is fairness to people with disabilities a different problem from fairness concerning other protected attributes like race and gender?
Disability status is much more diverse and complex in the ways that it affects people. A lot of systems will model race or gender as a simple variable with a small number of possible values. But when it comes to disability, there are so many different forms and different levels of severity. Some of them are permanent, some are temporary. Any one of us might join or leave this category at any time in our lives. It’s a dynamic thing.
I think the more general challenge for the AI community is how to handle outliers, because machine-learning systems—they learn norms, right? They optimize for norms and don’t treat outliers in any special way. But oftentimes people with disabilities don’t fit the norm. The way that machine learning judges people by who it thinks they’re similar to—even when it may never have seen anybody similar to you—is a fundamental limitation in terms of fair treatment for people with disabilities.
I am repeatedly struck with the realisation that carers are unnecessarily complicating childhood and family life – while believing they have no choice. They would probably say that it isn’t their fault, autism did it. Or that they’re just trying to help their child to succeed. Or that noone else can understand (“Walk in my shoes!”). After many years of hearing this same bullshit, I realise it simply isn’t true. Autism didn’t make your kid’s childhood disappear – them being put into hours of therapy every week did that. Autism didn’t make your child feel like someone was always watching them – the constant attempts to correct their natural ways of being did that. Autism didn’t make your child stressed – ableism did. You did.
The movement that I want to see, is one toward more simplicity for our disabled children. Autism isn’t destroying your children – you are. And you can’t stop doing it if you won’t evaluate your role in it.
Being an autistic parent of an autistic child means navigating a world that doesn’t see us as whole while advocating for two people at the same time. Specialists don’t take autistic parents seriously, don’t trust that we know our own needs, let alone a child’s. How can we when we’re in need of special services and accommodations, too?
Being disabled means hundreds of thousands of people believe they always know better than you do. I’ve spent my life—both before my epilepsy and autism and mental illness diagnoses and after—listening to authority figures and peers tell me who I am.
Disabled allyship rarely extends to those who are actually disabled. We answer their questions, and they choose not to listen.
I updated “Wanted: hospitals and doctors’ offices that…” with selections on access intimacy from “The Doctor and Nurse Who “Got It” | Health as a Human Right” and “Access Intimacy: The Missing Link | Leaving Evidence”.
I also added the selection from “The Doctor and Nurse Who “Got It” | Health as a Human Right” to “Accessibility, Access Intimacy, and Forced Intimacy”.
This is the story about a doctor and nurse I once had and how they “got it.”
“Getting it” isn’t necessarily something that you can define. It’s ineffable. It’s more of a feeling than a specific action. For me, it’s a connection that runs deeper than the diagnosis, the medical terminology, the treatments proposed. It’s a sense of being listened to and really heard. It’s feeling of being truly cared for. It’s a sense of empathy or at least a willingness to immerse oneself in my world as a patient, to feel and see what I face. When I think of my doctor and nurse who “got it”, I remember the sense of safety and calm they offered me and knowing that I would be okay. To each patient surely it may mean something different. But for me “getting it” gives me the ability as a patient to breathe, and perchance even to live.
Access intimacy is that elusive, hard to describe feeling when someone else “gets” your access needs. The kind of eerie comfort that your disabled self feels with someone on a purely access level. Sometimes it can happen with complete strangers, disabled or not, or sometimes it can be built over years. It could also be the way your body relaxes and opens up with someone when all your access needs are being met. It is not dependent on someone having a political understanding of disability, ableism or access. Some of the people I have experienced the deepest access intimacy with (especially able bodied people) have had no education or exposure to a political understanding of disability.
Access intimacy is also the intimacy I feel with many other disabled and sick people who have an automatic understanding of access needs out of our shared similar lived experience of the many different ways ableism manifests in our lives. Together, we share a kind of access intimacy that is ground-level, with no need for explanations. Instantly, we can hold the weight, emotion, logistics, isolation, trauma, fear, anxiety and pain of access. I don’t have to justify and we are able to start from a place of steel vulnerability. It doesn’t mean that our access looks the same, or that we even know what each other’s access needs are. It has taken the form of long talks into the night upon our first meeting; knowing glances shared across a room or in a group of able bodied people; or the feeling of instant familiarity to be able to ask for help or support.
One of the cruelest tricks our culture plays on autistic people is that it makes us strangers to ourselves. We grow up knowing we’re different, but that difference is defined for us in terms of an absence of neurotypicality, not as the presence of another equally valid way of being. We wind up internalizing a lot of hateful, damaging, and inaccurate things about ourselves, and that makes it harder to know who we really are or what we really can and cannot do. If no one ever acknowledges that we have a voice, we can forget how to use it. We might even decide not to.
I updated “Straws, Neurodiversity, and Disability” with selections from “051: Alice Wong Says #suckitableism — boss barista”.
The straw ban really is visceral. It really hit me in the gut because this is about a daily activity: drinking. If that was threatened by, if your right to drink and eat was threatened, I mean, it’s very real. And I think what’s really-and it’s not exaggerated, right-I think it’s this is what’s really sad is that people think, “Oh, don’t worry about it.” I’ve had so many non-disabled people online tell me, “Don’t worry. You know, these bans, these exemptions, you’re gonna be fine, you know? There’s no way you would be denied a straw.” And I’m just like, if you just kind of understood what it’s like to be disabled and how every day, even with an apparent visible disability like mine, you are constantly scrutinized. And the microaggressions are just so real that people just assume that everything is going to be OK and that we should all-pun intended-suck it up for the greater good. And I think that’s what’s really missing is that the conversation has always been about if you’re not with us, you’re against us. And we’re saying this is just another erosion in our way to participate in public, in our ways to be part of society.
Some of my friends online have already shown me these little signs posted at restaurants that are really passive-aggressive about, “We’re not serving, we’re not providing any straws anymore because we care about the environment. Thanks anyway!” People are actually being really proud of not providing straws, and that, to me, is like another sign that you know- Let’s say, people saying, “Straws are bad,” and they say, “Oh, people with disabilities should bring their own straws.” So let’s say they bring their own straws and start using them? In this kinda climate, you can imagine the kind of like possible harassment or criticism they’ll get just for using a straw in a public space. If you look at Santa Barbara, where they have one of the most punitive bans with really steep fines and even jail time for establishments that provide plastic? I mean that’s really where you’re creating conditions that send a message to people with disabilities, older adults, all kinds of people that may need straws that your way of life is not welcome. Your way of life is not normative. And what do you do with that? You just basically are marginalizing us, shoving us away, and telling us that we don’t belong in the same place as you do.
And this is you know, 18 years after the American with Disabilities Act, after decades of disability rights activism that really fought against segregation and against the days where there were laws called Ugly Laws. So I’m not sure if you realize this, but in the old days, there were laws that disabled people and all kinds of people were not allowed in a public space because they affected people. Just their mere existence made people uncomfortable. And I really do see a connection between these straw bans and these kinds of historic laws that discriminate.