One of my speaking programs on disability has a strong focus on universal design, which is defined as making spaces, objects, and experiences accessible to all people regardless of disability or other difference. Yes, this means having ramps, but much, much more.
Many of us with disabilities are actually less disabled in our home spaces. I have my home set comfortably for my needs. My office space has a bed to lounge on, rather than a desk and a chair, because I have a sitting disability. I keep the lights dim and music and television volume quiet, because I have sensory sensitivities. My fridge is full of food that won’t upset my irritable bowel syndrome. And so on.
A friend of mine once said, “If I don’t leave my house, I don’t even know I’m disabled.”
This is why there’s a conversation about the health model of disability versus the social model of disability. How much of disability is someone’s condition, and how much is it the lack of universal design in the world?
For my program, I interviewed several people with various disabilities. Some have visible disabilities, some have invisible disabilities, some have both. The disabilities include mental health, cognitive/learning, and physical disabilities (not just mobility impairments but also chronic illness).
I asked people what is difficult for them when they are outside their homes, and then I asked what can be done to make it easier for them to be away from home. In their answers to the latter question, I found 4 prevailing themes.
- Advance information. From figuring out how to physically maneuver a space, to feeling calm and confident about an upcoming experience, having advance information is super helpful. What physical activity may be required? Is there walking, sitting, steps, and how much and how long? Are there loud noises and flashing lights? What food will be served? What topics will discussed? Are there breaks, and when? Where are the bathrooms? Many of us with disabilities are great at bringing along our own modifications and coping skills, but we need to know what to prepare. I wonder if I need to eat ahead of time and bring along my lumbar pillow, for example.
- Familiar people. Friends with autism, anxiety, and bipolar disorder all agree that situations away from home are made easier by having familiar people around. I once connected with a new resident of my town who was on Facebook asking about churches. I recommended mine and invited her to meet me for breakfast first, so that when she finally came to church, she’d know someone. Using ice breakers to introduce people is also a good activity to make people more comfortable. And of course, you can also allow people to bring their own friends along.
- Quiet space. With my fibromyalgia, sometimes I need to step away from a group and have some quiet time to myself. I could be dizzy, having sensory overload, or feeling anxious. My friend who has a child with a disability needs to be able to take her son to a quiet space sometimes, and it needs to be wheelchair accessible. Others with mental health diagnoses asked for the same.
- Understanding. A simple awareness that certain spaces and situations may be difficult for a lot of people is so valuable. Did you know that at least 1 in 5 people have a disability? Now you know. Be open to learning about your friends’, coworkers’, classmates’, and relatives’ disabilities and what they find helpful when they’re out in the world.
Taking action on these 4 themes isn’t perfect universal design, but it is good inclusivity and forward movement in helping all people have fair access to our full lives.
A final note: Use caution with this trending conversation about the social model of disability, and the idea that universal design can “cure” disability. It certainly can help. In some cases it may come close to making a disability seem nonexistent. But we are all different, with so many differing conditions and severities and needs.
I am home right now. I am writing this article on a work schedule I’ve arranged around the ups and downs of my symptoms. I’m not even in my office right now. It’s 2:00 p.m. and I’m in bed. These are all modifications that are helping me live my best life. But I’m still in a lot of pain, and I’m extremely fatigued and annoyed at what I won’t be getting done today because of it. I’m still disabled.