Wednesday, January 20, 2021

A Letter to President Biden on Disability Policy

We initially published this letter in June 2020, while President Biden was campaigning for the office he now holds. On this joyous inauguration day, we're republishing it with renewed enthusiasm and hope for how the Biden Administration can best serve its autistic and disabled constituents.

January 20, 2021

Dear President Biden,

We would like to reaffirm our June 17, 2020 letter to your campaign:

Your campaign’s new disability policy makes us hopeful about the future for our autistic children with high-support needs. Thank you for taking the Americans With Disabilities Act (ADA), disability rights, inclusion, and quality of life issues seriously, and also for addressing how the COVID-19 pandemic impacts the disability community.

Many of our children are already adults, and many require full-time supports, which means we share your campaign’s concerns. We also want to emphasize areas in which the campaign can deepen and reaffirm its commitment to disabled people of all ages, and do the most good:

1.    Ensuring Community Living and Self-Determination For All

The COVID-19 pandemic, with its increased mortality rate for group home, state operated developmental centers, and intermediate care facility residents with intellectual and developmental disabilities including autism, is underscoring the very real dangers our children and their community members face when they are placed in congregate housing settings with insufficient supports and underpaid staff. We appreciate that your platform is dedicated to Long Term Services and Supports and Money Follows the Person.

However, as many of our children will always need 1:1, 24/7 supports, and these supports are often only offered in congregate settings—which tend to sacrifice our children’s rights to privacy and autonomy—we want to reiterate the necessity of your campaign’s dedication to the spirit of Olmstead. We are very concerned that a few vocal parent-led groups seek to use HCBS funds for housing arrangements that are nominally community-based or “intentional,” but functionally institutional. We appreciate your campaign’s clear dedication to Olmstead and ask that you prioritize ensuring that people with the most significant disabilities have equal access to truly integrated community housing with robust services, rather than the limited, largely congregate options they typically have now.

We would urge the Biden campaign to dedicate significant resources to ensure supported decision making options are a viable alternative to guardianship for everyone. By supporting our children’s autonomy—however that looks for each individual—paired with your commitment to using Home and Community Based Services (HCBS) options for quality housing supports in the truly most integrated settings, you can help our children with high support needs not only lead happier and more fulfilled lives—whether they live with us, with roommates, or independently—but keep them alive. And the best way to do this is by consulting disability and policy experts who either have or are informed by those with lived experience.

2.    Better Autism Diagnostic Tools

Research has consistently demonstrated that autistic people have always been part of our families and communities, and that if anything are under-diagnosed. We need more and better diagnostic supports and tools, with effective reach into families of color, with lower incomes, and that consider the variety of autistic presentations if we are to effectively address this matter. This will not only provide an underpinning for improved quality of life, but will feed directly into your campaign’s goal of addressing racial inequalities in special education.

3.    Disability Inclusion on Disability Policy

We are heartened by your commitment to creating a senior position in the White House dedicated to disability community engagement and policy coordination, and to recruiting people with disabilities in general.

Thinking Person’s Guide to Autism is fully committed to autistic and disabled inclusion: Some of us are disabled, and some are not, but we have all learned from disability wisdom and advocacy about how to help our children live the kinds of joyful lives they deserve, and secure the rights they need—and appreciate that you understand and will aggressively pursue a similar path to best policy practices.

As one of us recently wrote in the Washington Post, “Having a disabled child is not particularly rare,” and it is reassuring to see the Biden campaign clearly shares those values, and that your disability plan was developed in consultation with disabled leaders. We encourage you to keep listening to a diverse group of disabled experts. This is how effective disability policy is made.


Thank you,

Shannon Des Roches Rosa, Carol Greenburg, and Jennifer Byde Myers
Editors, Thinking Person’s Guide to Autism




Saturday, January 16, 2021

Notes From Your Friendly Neighborhood Inclusionista

Shannon Des Roches Rosa

I want to make this as friendly as possible, so I think it's important to start by clarifying terms: Inclusion, my lovelies, is a real and basic human right, and it simply means autistic and other disabled people have the right to be out and about in the world, and not segregated or hidden away as used to be the default for their community members. Inclusion does not mean forcing people like my high-support autistic son to be in places they don't want to be, that aren't set up for them, or in which they aren't welcome.

But even when we embrace inclusion as a disability rights baseline, my son still doesn't get to do all the things—but that's because of accessibility barriers, not because inclusion itself is a flawed concept. Even though The Americans with Disabilities Act (ADA) installed accessibility as the law of our land in 1990, in practice enforcement is slippery (and imperiled, call your members of Congress), as wheelchair user Robyn Powell observes:
"Of course, passage of the ADA did not make ramps and elevators magically appear; nor did it immediately halt discrimination against people with disabilities. Progress takes time."
 Accessibility law is not accessibility reality. Photo © Richard Downing
[Image: Two white women (one in a wheelchair, one sitting on the floor)
in front of a museum exhibit that says, "Despite the success of 504 and
the ADA, people with disabilities still do not enjoy full access
and inclusion in today's 
society." The wheelchair user is rolling her eyes
 and the other woman is 
making an over the the top expression
as if she's shocked by what the exhibit says.]

That gap between ADA law and universal implementation means people are right to be angry about how few places are truly accessible, as the situation really is completely f***ing frustrating and unfair. And so the battle must continue, on all accessibility fronts, so that my son and all autistic disabled people get to have All The Opportunities they deserve.

But just because something has been deemed "accessible" by ADA standards doesn't meant it actually is. That has to do with another aspect of accessibility: accommodations. Take autism conferences: they should be autism-friendly environments, but few actually commit to the accommodations autistic people need, and which aren't always stipulated by the ADA. Some planners will make a token gesture, such as having a quiet room; but most sessions, panels, and posters occur in sensory-onslaught environments, and very few happen in a way that would engage, or be accessible to, a person like my son.

All these barriers to accessibility and accommodations mean it's not reasonable, at this time (and even when we're not staying home because of a pandemic), to expect my son to be able to go everywhere, even places that openly want to include him. Even though my son has so worked so hard on his coping skills and boundaries, I still wouldn't take him to places that I know are too taxing, like loud restaurants, crowded public festivals, or quiet concerts or ceremonies. Sometimes this means missing important family events. And while those situations can be bittersweet, they are also part of understanding what reasonable accommodations for him look like.

Not everybody understands my autistic son's reality, which means we are constantly having to educate the people in our lives, and hope they will at least try to understand that our openly, obviously disabled dude is usually doing the very best he can. We can help by sharing information such as why some autistic people can't wear face masks, why autistic meltdowns happen; why autistic "behaviors" usually have reasonable causes; why stimming can be joyful and therapeutic and not a behavior to suppress; why grabbing food is never OK, but sometimes impulse control is a thing despite knowing better—so our friends, family, and social media network will have realistic expectations about what he can and cannot tolerate. Inclusion isn't going to get any easier if we let society dictate that autistic people can only behave like non-autistic people.

The more we're out and about, the more we're visible and cheerfully unapologetic about it, the more we show the world what inclusion looks like on autistic terms, the more other people will get what inclusion actually means. This includes (for me, at least) minimal patience with people who are uncool about my son being in places he has every right to be, and when he is not violating anyone else's space nor causing a disturbance.

It's also OK, on tough days, to retreat inside a circle of comfort while we figure out how to do better next time. For me, these comfort circles mean hanging with people and going places that both want and understand how to accommodate my sno. These circles may not always be as big as I wish they were, but that's fine as long as they contain people who stick by us even when it's not easy. Who understand that my son is the greatest dude there ever was, and also that there are some scenarios that don't work for him. Like the small local grocery store with the cashier who has witnessed my son need to leave suddenly on more than one occasion, yet teases him about his teenage beard scruff; or the visiting friends who don't mind that my son considers their guest room bathroom his bathroom, and who understand that when we accompany them to local tourist destinations, my son and I might cleave off a little bit. Or a lot.

What helps me when I get frustrated about the smallness of my son's (pre-pandemic) circles is to remember that his generation has so many more inroads and opportunities than autistic people just one generation older: things like sensory friendly movie and theater showings, museum times, and adaptive surfing. These opportunities don't work for everyone, and some of them are kind of the opposite of inclusion, but they exist, and at the very least they let my dude and his community members get used to those spaces and activities, and possibly lay the foundation for going to those places more spontaneously.

Boogie boarding with a A Walk on Water
[image: my son, a white teen dude wearing a wetsuit, on a blue boogie board
in the ocean, with the support of a Latino man in a wetsuit too.]

Some parents say they dream of things like an "autism island" where everyone gets their kids, and nothing has to be explained. While I get that impulse, parents choosing to segregate their disabled children in "intentional communities" is ethically thorny territory. I also get why some parents are conflicted, confused, or fed up about 'inclusion,' as some autism parenting spaces are hostile to that term's use as a disability rights-specific adjective, as in (truly) inclusive communities, and inclusive education. This is why, as always, it's important to look to autistic and disabled adults with lived experience about what best inclusion practices look like. Parents who come from outside the disability community are too often not the experts or role models our children need.

I call myself an 'inclusionista' because I want my son to be included, and also because that continues to be a somewhat radical stance. For his inclusive reality to happen, we need to think about inclusion the same way we think about feminism, or fighting racism: as centering basic human rights, and as the default right thing to do.