Accessibility Interview

For people with an invisible disability, does engaging in public space often require prior planning?

It does require a lot of planning, and it changes depending on what the activity is and how long it will be. I have medications I need to take every couple of hours to keep my heart and organs functioning, so I need to make sure I have access to those and something to drink at all times. One of the conditions I have (POTs) also leads me to dehydrate faster than others and I’ll pass out, so I need to stay hydrated at all times. Traveling and using public transportation requires the most planning because I need to remember my face mask to keep others germs away, almost a dozen different medicines, and hand sanitizer. I also need to dress in layers because I can’t regulate my own body temperature. I switch between shaking and being too cold, to sweating and being too hot. I need to remember my iwatch to track my heart rate because it will spike to 200 bpm and then drop suddenly to 50bpm. Sometimes I have to use braces because my joints will randomly dislocate due to having EDS, and I’ve had to use a wheelchair in the past for long distances, so I need to know what I’m doing before to know what all I need to bring. If I’m staying overnight somewhere it’s even more planning because I have shots and treatments I need to do every other night. That means I need to remember rubber gloves, a mask, bandaids, the shots, the vials of fluid, rubbing alcohol, gauze and sometimes more. It’s usually a backpack full of supplies honestly. 

What are the most common forms of discrimination or other negative experiences might people with invisible disabilities face when using accessible spaces? (e.g. parking spaces, seating or public toilets) while in public spaces?

It’s funny because most of the negative experiences I have are due to able-bodied people and not anyone with a disability. The able-bodied are what we in the chronic illness community call someone who is healthy and without any disability.  Oftentimes I experience nosey able-bodied people telling me not to use a disabled spot or area and to save it for someone with a disability. I’ve been questioned about where I’ve gotten my handicap parking pass from, or accused of taking it from my grandparents (I don’t even have grandparents so that comment always makes me laugh). Rarely do I actually see people abuse accessible spaces. In the invisible illness community we are aware that disability comes in many forms, and if someone is using a space, they probably need it. The last thing we need is the able-bodied policing and harassing us in areas that are meant to make our life easier. 

Do you know of many positive experiences or schemes set up by businesses in place to improve the experience of those with invisible disabilities while in public spaces?

The best experience I’ve had is with Heathrow Airport in London. Their disabled signs say “Not all disabilities are visible” with an image of a man, woman, and a wheelchair as a reminder that a disability doesn’t always look one way. They also have all of their staff trained to be aware of those with invisible illnesses. If you have a condition, they give you a sunflower lanyard to keep on you while in the airport. The staff is trained to recognize these lanyards and if they see someone with it struggling, they come to help you. This means in large crowds, they will often have you come to a less condensed area or a different line, they’ll help you with your luggage when you get in the plane, they ask if you need a wheelchair or help, and they don’t ask you to “prove” being sick.. It’s weird but in the United States, when I ask for help I get an attitude in response until I show them my port or scars or ID card “proving” im disabled. It’s ridiculous to need to prove that you need help. 

Do you find instagram an important space in allowing more open discussion about invisible disabilities? -useful for spreading awareness and overcoming stigma?

I do find instagram an extremely important space to allow a more open discussion. I didn’t expect the profile to be so helpful to so many different people, but I think just being open and honest helps a lot of people. Many of us with chronic or invisible conditions look too healthy to be sick, but act too sick to be healthy. So it's common for us to try to pretend to be stronger or act “normal” in public to avoid questions and accusations. Many people with disabilities are even afraid to use motility aids since they don’t need them 100% of the time. When able-bodied people see you in a wheelchair but then stand up, they will often accuse you of faking it. But motility aids aren’t always used when someone has no use of their limbs. Getting an opportunity to be open about these struggles on a platform where everyone else has similar struggles makes you feel less isolated and crazy. When you’re trying to keep up with healthy people all day long, it can make you feel even more alone and isolated. Knowing people through social media that also have catheters or ports, feeding tubes, the same medical devices/ restrictions or whatever makes you realize you’re not the only one struggling with having a condition. I receive messages every day about how they were suicidal and depressed before finding a community online and realizing they weren’t alone.

Do you think a more inclusive international symbol of access would be an important step towards improving access issues?

Yes, Yes, and YES!

The chronic illness community talks about this ALL the time. If everywhere did the same thing as Heathrow Airport or even something similar, it would help so much. I travel a lot, and something I’ve noticed is how different accessibility is in every country. Some areas I can’t even travel to or go with a wheelchair because it’s not accessible for me at all. I’ve been in areas that have stairs and no elevator for my wheelchair. Having a universal symbol of access would be an extremely important step towards improving access issues and reducing stigma behind being disabled. 

Interviewed and edited by: Scarlett Elliott