Editor’s note: We met Allison Wallis during the height of the pandemic when one of our reporters interviewed her for a story about city officials deciding it was OK for disabled people to visit parks and beaches with a caregiver. She has since continued her journalism education, exploring the barriers people with disabilities face on Oahu as well as solutions we should all be thinking about. Her training as a journalist and her passion for helping people understand how the world she lives in may be a bit different than others convinced us to ask her to become one of our regular columnists.

When you think of disability, what images come to your mind?

Most people picture a wheelchair user, generally male, who is usually a paraplegic. It calls to mind words that are thankfully falling out of public usage, like “handicapped” and that word that starts with an r. When I ask about the emotions the word disability brings, they are almost always negative feelings, like sorrow and pity. 

But what if I told you that I’m a proud disabled woman? That I don’t feel self-pity, that I use a wheelchair sometimes or am homebound frequently or that I have to attend graduate school online rather than in person.

I’m not angry that I have progressive genetic conditions that will continue to degrade my body as I enter middle age (though to be honest, the severe chronic pain can wear me down). 

I’m angry that there are no sidewalks or accessible bus stops in my neighborhood and that a Handi-Van trip to a Honolulu doctor from Waialua can take an entire day.

I’m concerned that there is a significant shortage of medical specialists in Hawaii, so I have to regularly spend tens of thousands of dollars traveling to the mainland for care.

I’m sad that I can’t go to Haleiwa Beach Park in my wheelchair with my family because, even though there are wheelchair mats down where the sand starts, the parking lot is rubble, and there are no sidewalks to take me there. 

I am upset about the lack of public access and medical care in Hawaii. I don’t want people to pray for me or hold the store door. I want them to push our lawmakers to build sidewalks, and revamp (and rename) the Handi-Van, and improve public schools so that our disabled keiki can have equal access to everything their abled-bodied peers have. I’d like a service dog and for everyone else in the state on years-long waiting lists to have one, too. 

I want us to build universally designed homes with doorways wide enough that a wheelchair user can comfortably live there and that disabled friends and family can visit. My family has searched for a one-level, accessible home in Waialua or Haleiwa for over two years. I live in a rental that isn’t easy to navigate in my chair, with no relief in sight. 

I want to go to places in Haleiwa besides the Post Office and Longs, and for local businesses to finally put the funds into bringing their locations up to ADA standards. Congress signed the Americans with Disabilities Act into law in 1990, 34 long years ago. I still can’t travel in my chair from one end of Haleiwa to the other. 

It’s not my health or disabilities that are keeping me home. It’s the inaccessible world outside my front door.

Hawaii is an incredible place to live and grow old. We pride ourselves on caring for our kupuna and keiki, building extended ohana families, and looking in on our neighbors. If Aunty wants to hitch a ride to the doctor, we make sure it happens. 

But what if Aunty is very independent and wants to go to the doctor by herself? Or to take a solo trip to the beach? What if someone doesn’t have those personal connections? How do we maintain someone’s independence as they age and develop disabilities? How do I hold onto mine? 

Somewhere between 20% and 25% of the population in the U.S. has at least one form of a disability. These can be physical, mental, developmental or emotional. Many people have more than one. It’s rare for anyone to make it to old age without being disabled, even though we don’t tend to acknowledge it as such — we just think of it as “growing old.” 

Back in the 1970s disabled people began to organize forming groups like ADAPT.

These activists and scholars developed a different way of looking at their lives. It’s not their bodies or minds that are the issue, they decided. Going to the doctor might have been helpful, but it wouldn’t help a wheelchair user get on a public bus.

Somewhere between 20% and 25% of the population in the U.S. has at least one form of a disability. These can be physical, mental, developmental or emotional.

Rather than their bodies, it was the world around them that was the problem. It was society that wasn’t building ramps or including children in mainstream classes, or hiring qualified disabled people. They named this concept the Social Model of Disability.

I learned about the history of disability and the Social Model during my time at the University of Hawaii in the online Diversity and Disability Graduate Program. I was bedbound and very ill at the time, and I was slowly starting to realize that my life was going to be different and much harder. My previous career as a classically trained pastry chef was dust. I needed a new way forward. 

The program was a godsend for me. I took classes from bed and learned how to manage my health flares and classwork. My mentor, disabled activist and professor Megan Conway, introduced me to trailblazers in the activism world.

I learned about the laws and regulations designed to protect disabled people in the U.S. and how rarely those laws are enforced. Discrimination, known as ableism, is rampant. (Despite popular opinion, it is nearly impossible to find a local disability attorney who will work on public access issues.) 

I rediscovered a love for research and writing at UH, and I’m now a freelance journalist who specializes in stories about disability. 

In this column, I’ll be taking deep dives into some of the issues and great things about living with a disability here in Hawaii. We’ll learn about the ADA and related laws and how to effectively work for positive change, and explore how to live your best life. 

Hawaii is a wonderful place to live — for many people. Let’s work together to make it a place full of aloha for all.