Intersectionality, Access & Communication

Jules, a white person wearing rainbow clothing and holding a cane, stands in front of a table with a sign on it that reads "Neighborhood Access.”

April is both Deaf History month and Autism Acceptance Month. I spoke to Jules Good to learn about their experience as a late-Deaf and Autistic person and the important issues facing the Deaf and Autistic communities today.

Jules describes themselves as “a Deaf entrepreneur working to address accessibility barriers faced by disabled folks of all ages through human-centered design and innovative policy approaches.” Their non-profit, Neighborhood Access, has helped clients like Black Lives Matter, ACLU NH and numerous candidates for public office, make policies, events and physical spaces more accessible to disabled people. 

What's your personal journey been with autism and deafness? 

Growing up, I was always very different from my peers, had a hard time socializing, making friends— I was the odd one out. I never did anything about it in terms of getting evaluated. As I started therapy in adulthood, autism came up as something I should look into. So I went through the Diagnostic Statistical Manual, the classic tool therapists use for diagnosis, with my therapist. She said that I met the criteria for autism. That was several years ago, and today I’m on a waiting list to get a formal neuropsychological evaluation. The waitlist is a year long. 

Around the same time, while I was in my second year of college as a music education major, I found out that I had moderate to severe hearing loss. I had been having a really hard time, stagnating and not improving in my music, and I couldn’t figure out why. My viola teacher recommended that I get my hearing checked. I followed her advice and found out that I had lost about half my hearing in both ears. I have progressive hearing loss, so today, without my hearing aids in, I don’t hear anything. 

My diagnosis of both autism and deafness in adulthood have both been fairly recent. In both cases the diagnosis was important because it gave me access to supports like hearing aids. With autism especially, though, getting the diagnosis puts the way that I operate into perspective.

A large banner that says "unity". The Black Power fist is in the middle. On either side are symbols representing mobility, hearing, vision, and cognitive disabilities.

How does your personal journey impact your activist stance and your work founding Neighborhood Access? 

Prior to any of this becoming a part of my life, my mom was a Special Education teacher at the high school that I attended. When I was a student, I would go and hang out with her and her students during my lunch break, because I didn’t really have friends. As I learned their stories, I realized there was such a disparity between my experience as a student in mainstream classes and the students in the Special Education program. They were really isolated, they weren’t able to get involved in extracurricular and electives, and this was in a school that’s regarded as having one of the best Special Education programs in the country. 

My mom would tell me stories about the challenges her students faced. The experience of disabled students  was on my radar but not something that I thought, “I’ll dedicate my life to this.” I was attending college for music education, I wanted to be a high school orchestra teacher and have programs for student musicians with disabilities. When I started losing my hearing and getting accommodations for the first time, I realized how messed up the world is and inaccessible when you are disabled. 

What catapulted me to dedicate my time and energy to access for disabled people was the realization that I was struggling so much as a white, highly educated person. I thought to myself, “If I am experiencing these struggles, what’s happening for people with compounding marginalizations?”  The answer is that we live in a society where it’s really difficult  for people with multiple marginalizations to not only thrive but survive. Disabled people  don’t struggle because of their disabilities, but because they have to navigate really difficult and rigid systems designed without people like us in mind.

That realization put me in this activist mindset. I entered a Masters in Public Policy with the intention to then go on to law school and pursue a disability rights path. But what I realized is that disability rights is what’s on paper. Disability justice is what we live every day. That’s what I’m interested in cultivating. There are a lot of people doing disability rights work, there aren’t enough people, especially those with institutional power, doing disability justice work. I want to empower disabled people to make choices independently, to live our lives like everyone else. 

A trifold presentation board with bios and pictures of Black, queer, disabled people.

What do you think are the important access issues facing autism and deaf communities today? 

A lot of times people don’t see Autistic and Deaf communities as experiencing a lot of overlap, but a lot of our access needs boil down to communication. 

People can wrap their heads around the communication needs for the Deaf community. They can often relate to what it’s like not to be able to hear, and conceptualize supports like a captioned phone, an ASL interpreter, writing things down rather than saying them aloud, and so on. That stuff is more tangible, we understand that that person can’t hear and that can impact their ability to speak. Of course we can always be learning more and coming up with better tools for access, but these support needs are more tangible for most people.

With autism, people are taught that it’s a spectrum, a weird unknowable, unquantifiable thing. And it’s true, autism can present in a lot of different ways. Some people have high support needs in some areas, low in other ways. I am what they might have called in the past a “high functioning” Autistic person, but we don’t use functioning labels anymore. (The issue with functioning labels is that they oversimplify the lived experience someone has.) What I see people do instead is talk about people with different support needs. For example, I am an Autistic person with low support needs for transportation – I can get in the car and drive myself where I need to go–  but I have high support needs for housework—there are certain tasks I can’t do on my own. 

In the realm of communication, there are different support needs that Autistic people can have. Some people are non-speaking— they use an augmentative & alternative communication (AAC) software to communicate. They can select the correct icons and the software reads aloud what they would like to say. Some people are conditionally non-speaking, meaning they can’t talk when they’re stressed. Then, there are people who are comfortable talking most of the time but may get really anxious about what to say in certain situations, and having scripts can be really supportive to them. 

In terms of the needs of the Autistic and Deaf communities, I’d like everyone to understand that communication needs are really varied and unique and that people know their communication needs best. Many folks make assumptions like that a Deaf person doesn’t speak for themselves. That’s not always true. Asking people how they like to engage and being open to the idea that people might not present in the way you anticipate them to is really important. It’s fine and normal and doesn’t invalidate their experience or the labels they claim for themselves. 

It sounds like your diagnoses really prepared you to know and understand your support needs. How does access to medical care impact the Deaf and Autistic communities? 

There is a huge disparity in mental health access and diagnostic access. 

We already know that there are huge disparities in mental health access along racial and socioeconomic lines, not only because of the financial hardship of paying for medical bills but also around the stigma of seeking those services out in certain cultures. It’s not encouraged to seek help and get a diagnosis. If you’re not diagnosed in childhood, insurance won’t cover diagnosis unless it’s mandated by court or your employer etc. The process of accessing a diagnosis can take years, and during that time you may not have full information about your rights, supports that are available and the communities you are a part of. 

There are a lot of people struggling, falling through the cracks, not getting the diagnosis or support they need. There are a few groups focused on closing that gap. One is the Autistic Women and Non-Binary Network.  One is the Black Neurodiversity Assessment Fund. Another is the Autistic People of Color Fund, and the last one I’d cite is the Autistic Self-Advocacy Network.

Jules measuring a doorway while performing an accessibility audit in an old historic building.

When it comes to equity and inclusion, how do you believe intersectionality supports collaboration?

Intersectionality is so important! 

Many times, organizations and people and policies focus on a specific group of people, they have resources or knowledge about specific groups.  What tends to be forgotten is that each of these groups is helping an entire person with a complex background, culture, and unique needs. For example, being white and educated and late-Deaf influences the way I experience deafness. 

It’s really important that we hold everyone’s identities and marginalizations equally. Sometimes we are focusing on one aspect but it doesn’t mean the other aspects disappear. I can’t wake up one day and not be Autistic. As organizations working in these spaces, it’s important that we not just hone in on one particular type of experience but lots of different experiences.  That’s why I’m thrilled Neighborhood Access has a diverse board and staff because we have to learn from people who have lived experience in all the forms of disability we’re trying to solve. 

In terms of collaboration, it’s important for people to swap knowledge. I worked with chapters of Black Lives Matter in NH and they taught me about racial justice, I taught them about accessibility, we both walked away with a better understanding of how to help each other’s people. It’s so important to do that, it’s important that we not just listen to the people who are well known and well lauded but those people who are living lives with these issues every day.