Though it remains imperfect, access is an essential component of neurodiversity. In a world full of opportunities, legislation such as the IDEA and ADA provides opportunities for neurodivergent people to access the recreational, educational, social, and career activities available to people with typical neurologies.
Though access is a crucial component of the neurodiversity movement, access to a neurotypical-dominant world is akin to widening a round hole so that a square peg will fit. In short, it’s better than nothing. But is it ideal?
Access to a world that prioritizes and praises neurotypical brains while often marginalizing and punishing neurodivergent brains can be painful and difficult. Many people, neurodivergent or not, can relate to feeling out of place in settings that were clearly not designed to be inclusive to them.
Even when often-mandatory settings such as hospitals, schools, and places of employment take steps to provide access to neurodivergent people, these steps toward accessibility often come as an addendum to usual procedures rather than as an integral part of systemic design. As such, they are often segmented, staggered, and othering.
Enabling genuine, integral access for neurodivergent people and other marginalized groups requires EXPECTING that people with a variety of needs and experiences will need access. It involves offering several communication options early on and offering them to everyone regardless of outward signs that the options may be necessary. It involves allowing people to define their own identities, needs, and experiences through construction that does not require disassembly of inaccurate identities cast upon them based on inadequate understanding of statistics. When access is an afterthought, disabled people pay the price.
Imagine, for example, a chemotherapy appointment for a young, nonbinary, autistic adult. We’ll call them Cathie. After always having a private room in the past, Cathie is brought – without warning – to a shared room to receive chemotherapy on their third visit. They begin to rock anxiously. The nurse comes and offers to bring them to a private room instead. After being helped out of their wheelchair only minutes prior, they are helped back into their wheelchair and brought to the other room. The nurse begins to ask a series of questions. She asks Cathie, “have you had any pain?” Cathie, a chronic pain patient, answers “yes, the usual.” The nurse responds, “oh you shouldn’t be having pain. Well, how would you rate it?” Cathie, overwhelmed, motions for their caregiver to answer.
The nurse exclaims, “She can answer for you, sweetheart! I don’t mind. That’s fine with me.”
Cathie’s caregiver (also autistic) begins, “well, Cathie struggles to rate pain because they – ”
“Yeah, I know,” the nurse interrupts. “I’ll bring a picture chart next time to help her [sic] understand.”
The nurse begins to scrub their port (with no warning). Cathie flinches. “I know it hurts, but we’ll get through it,” says the nurse.
Overall, it was still one of the better experiences Cathie had encountered during chemotherapy.
Contrast that experience with the following:
At a new primary care appointment at a different office, the intake sheet has a space in which to write pronouns. The receptionist includes a piece of paper in the packet and says, “We’re happy to take phone calls from anyone you’d like us to. This is the paper you can fill out with anyone you’d like to have talk to us on your behalf so we know you’ve given permission. You can change the information at any time. You can contact us by phone or send a message through MyChart.”
The nurse and the doctor both clearly explain what they’re going to do before they do it. When Cathie explains that they have difficulty rating their pain, the nurse says, “That makes sense. I can write a note in the chart saying ‘severe chronic pain.’”
Before leaving, the doctor notes a screening that Cathie will be due for in the near future. She says, “I’m letting you know now so that you can think about it. When you get here next time, if you’re comfortable, we’ll do it. If you’re not, we won’t. It’s completely your choice. There are no conditions to receiving care here.”
At the second appointment, fewer accommodations were necessary, and it was a much better appointment overall! The primary care office, which primarily serves people who identify as LGBTQ+, demonstrates what it looks like to expect that the wide variety of people they are serving will have various life situations, support needs, communication preferences. Instead of “accommodating” them, the office had procedures in place to be prepared for them. In addition to providing access, the appointment provided something even greater – respect.