My feet are aching, my back hurts, and I am so exhausted I can barely function. Each step feels like a marathon as I try to find somewhere to sit. “Why do I do this to myself?”, I think as I sit down. I am at the amusement park with my kids to celebrate my oldest’s 14th birthday. After briefly considering renting a scooter, I decided against it (for many of the reasons below). I started to think about why I decided to put my chronically ill body through so much when there are tools specifically made to help me.
Assistive devices are tools that disabled people use to help give us access to things we otherwise wouldn’t have access to. These include wheelchairs, walkers, canes, hearing aids, cushions, and many other things. They allow us more freedom and a better quality of life, and can even (in some cases) make disabilities less impairing.
While logically I believe that everyone and anyone who is helped by them should use assistive devices, I have a hard time doing this myself. I know that not all people have the option of “choosing” to use devices, some people need it for their survival, and others do not have a choice in other ways. My position as someone with invisible disabilities is a privileged, though complicated, one.
This list is incredibly personal and is directly related to my experience as someone with chronic illnesses that mean I am often exhausted and in pain. Though it varies, I am currently at a point where I am unable to work outside of the house, but can work from home. I have to cancel more plans than I keep, but sometimes I am able to have fun outside of the house. I am also a white, fat, queer femme woman parent of four kids. All of these identities and experiences come together to inform this list and I by no means am attempting to speak for any other disabled people.
1. Feeling Like I am Not Disabled Enough
One of the biggest reasons that I hesitate to use assistive devices is because I feel like I am not disabled “enough”. This is bullshit for a number of reasons. First of all, it is not as if there is some committee that I need to prove how sick I am to in order to be allowed to use an assistive device (though this is sometimes the case to get things covered by insurance or for specific tools such as disabled parking permits.) The bottom line is that if something is helpful for me, I should use it! I am reminded of remote controls and how most people would be able to change the channel without a remote, but it is common for pretty much everyone to use a remote because it makes things easier. Assistive devices are no different. They are tools like a remote or a hammer. Sure, I may be able to attend a specific event without a cane, but using it will make it easier for me to get around and have less pain afterwards.
2. General Internalized Ableism
While I talk about fears of not being disabled “enough” to use assistive devices, I also am afraid that using a device makes me “actually” disabled. I am disabled by chronic illness plenty already, but so often I find myself downplaying how disabled I am. Like, I just got home from a family vacation and spent many days in bed recovering and I acted as if it was shocking or surprising, when really it is the status quo for me. Whenever I do anything I need a lot of recovery time, but because of internalized ableism, there is a part of my brain that won’t acknowledge that and using an assistive device feels like “giving in” to my disability (which is ableist as hell!) Ironically, using these devices would probably make me less impaired on a day to day basis because I can conserve energy.
Cost is a huge barrier for some people. The prices of many devices can be exorbitant if insurance doesn’t cover it. However, for me this is a barrier I could get over, especially since at this point many of the devices I need are on the lower end of the price spectrum. It wouldn’t be easy and I would need to cut back in some ways to afford some of the things that would be helpful, but I could do it if I prioritized it. It is deeply fucked up though that all of us don’t have what we need.
Being visibly vs. invisibly part of a marginalized group is complicated. Looking closely at how visibility can make things better and worse is beyond the scope of this article. However, I don’t think there is any doubt that visibility does make some kind of difference. Right now most people cannot tell I am disabled by looking at me. Though if I were using some kind of assistive device, I would all of a sudden be a visibly disabled person and have to deal with all of the bullshit that that entails. Intrusive questioning, being infantilized, and all sorts of ableism that I don’t currently have to deal with. More than anything else on this list I think there is some legitimacy to this reason, but that for me personally, dealing with this crap would be ultimately worth it for the relief I would get from pain and exhaustion.
While other people’s ignorance can be an issue (see above) this reason is my own ignorance. Namely, I’m not sure exactly what would be helpful for me. There have been times when I have been more assertive about having a pillow with me and laying down places and that has been incredibly helpful, other times I will have a specific ache and know that a cane would help, but in general I don’t know what would actually work for me. The only way to really find out is to try different things and talk to people with similar disabilities who have found things that have worked. But since I don’t know how or what assistive devices would help, it makes it easier for me to give in to my other reasons to not use them.
This is a huge one and deserves its own article (or book!) The intersection of disability and fatness is complex and the way that assistive devices play into this is even more so complex. I got the idea for this article when I was at an amusement park with my kids and considered renting a scooter. I ultimately didn’t, in part because I have heard stories from other fat friends on scooters about how shitty people treat them. Mean looks, fatphobic and ableist comments, and other indignities are part and parcel of being a fat person using certain assistive devices and dealing with that bullshit is exhausting and demoralizing. As a medium fat person I do have relative privilege in this area, but I am not immune from this fuckery. It is completely unjust and makes me angry whenever I think about it. I am even more angry because not renting the scooter meant I have to leave earlier than I would have had to otherwise (and therefore make the kids leave) and I was unable to do even basic tasks for the next several days.
7. Other People’s Fear
Because my disabilities are generally invisible, it is easy for the people that I love and care about to mostly be able to forget about them. Many disabilities are an important part of the person and family and friends would never want the person to be able bodied. In my case, I would like my chronic illnesses to go away and the progression of my illnesses is something that causes me and my loved ones pain and concern. Like all of these “reasons”, this one is also bullshit and has roots in ableism, but it is real. When I use an assistive device my parents and other family members get concerned and afraid for my health in ways that make them uncomfortable. Of course they would get over that, and of course I should not base decisions on their misplaced fear about how sick I am. Unfortunately, it’s not that easy. For better or worse I do downplay my symptoms to those around me, especially my kids and my parents, so they don’t worry about me or how I am feeling.
All seven of these reasons to not use assistive devices are bullshit. Bodies are all different from each other and I’m sure there are some assistive devices or accessibility hacks or other things that almost anyone can use to make their lives better and enable them to do more of the things they want to do. Ableism runs deep and it is important to question why we make the decisions we do. Processing all of this has made me excited to now try different assistive devices and start incorporating more of them into my life. I am happy for any suggestions or ideas about how different devices may help me deal with my pain and fatigue.