Migraine

The Accessibility Thing

Image Description: Felt board with letters spelling out “The Accessibility Thing” with metallic decorative backdrop.

Accessibility is something I was actually taught in school – most likely because both fields I chose to study had a tremendous amount of restrictions in place because of accessibility, but nonetheless the topic was never hidden from me.

Earlier this month I was presented with a question revolving around what barriers I face and where this world falls short on being accessible to me. When you think of a neurological disorder like migraine, even if you understand it can be disabling, you don’t see the disability existing on a physical level. I’ll admit, even I struggle to always see the physical limitations.

While I’m addressing “accessibility” I want to take the time to address barriers I face at home, in the world, and personal barriers.

Accessibility: Limitations At Home

  • The Stairs – often times, extra exertion can wear me out. Having to go up and down stairs increases my fatigue and certainly isn’t pleasant when my balance is off or I’m met with vertigo.
  • My Bathtub – first off, standard size bathtubs truly only exist for children. I’m a tiny adult and there’s no comfortable way for me to soak in my tub and relax. Not having a comfortably sized tub is the first limitation, the second however is the connection of my tub to my shower. When I’m struggling with my balance, or showering with just the nightlight on to avoid the bright overhead lights the tub walls become a tripping hazard.
  • Cooking – Cooking is incredibly hard, especially when every meal you eat is home cooked with fresh foods. My diet has to be carefully monitored with my migraines and abdominal pains. Being in pain most of the time, I can’t cook complicated meals and I certainly cannot do so under bright lights. When I’m not in pain but my depth perception is off, using a tool like a knife poses the risk of losing fingers. This also means I rely heavily on the dishwasher as I regularly am unable to see well enough to get the dishes clean washing them by hand.

My limitations at home are short numbered, and thankfully living with my parents minimizes their impact. My mom takes on the cooking responsibilities and my dad the dish washing responsibilities. On days where I can’t bring myself to either get up or make the trip up and down the stairs they bring me what I need. The only true barrier I don’t have a perfect way to work around is my bathtub. I can shower in my parents walk in shower, but none of our bathrooms have a dedicated soaking tub.

You may think I’m crazy saying the lack of a soaking tub is a barrier, but the benefits of said tub include: reduction of pain or inflammation, calming of the nervous system, reduction of stress and anxiety, increased blood flow, better heart function, increase serotonin levels (the happy hormone), and increase hydration. As someone with migraine, chronic pain, and seemingly increasing anxiety/stress this would greatly benefit me.

Accessibility: Limitations Away From My Home

  • Limited Bathrooms – Most stores do not have public restrooms, unless they are very large retailers. Most public places such as beaches and parks also do not have easy access to bathrooms. I have to pee frequently as I have to stay extremely hydrated for my medicine to work properly in my body. If I have to take nausea medicine, my need to pee increases dramatically. With my abdominal pain, my bowel movements have also become frustrating and unpredictable, so being out in public without easy access to public bathrooms prevents me from going to those places.
  • Noise – I cannot tolerate places that have a lot of noise like restaurants during peak periods, bars playing loud music, closed concert venues, open street markets, and busy stores. Too much noise and an inability to escape the noise causes me to go into sensory overload and can induce a panic attack.
  • Doctor’s Offices – I find most offices to be 100% inaccessible. Everything that is mandated by codes – the chairs, the type of overhead lights, the hygiene products – serves as a barrier for me. The chairs are not comfortable and often leave patients stacked on top of each other, most offices don’t allow you to turn of the lights even in the exam room, and the hand sanitizer is not a smell I do well with. Aside from the required stuff, things such as blaring TV’s in waiting rooms, non-sound proof walls, noise making children’s toys, and the incredibly brief 15 minute time slot further make the office and the care inaccessible.
  • Parking Spaces – Maybe it’s everyone else’s inability to park that makes it difficult, maybe it’s my unwillingness to be the incredibly sick person who looks well parking in the handicap spot. Nonetheless, parking further away from where I’m going can wear me out before I even make it to the door especially if it’s hot outside.
  • Doors – Seriously why are all doors like 1,000 lbs? And why do most places not have automatic doors?
  • Food Menus – I’ve officially reached the most annoying and frustrating part of my journey with my conditions: I have to be aware of everything that is going into my food. Most restaurants don’t even have up to date menus on their websites – if they even have a functioning website – and the people who work their certainly don’t have time to grill the chef on ingredients used in every dish. I have to be conscious and I don’t want to be a burden to a server, but if something has an alternative and the server or barista ignores the request because they don’t understand how dietary restrictions work, it leaves people like me in an incredibly uncomfortable position.

I could probably find hundreds of examples, but these are the barriers I face most often and recognize as things that prevent me from participating in a vast majority of activities. Of course, accessibility barriers extend to areas all over the world and societal spaces I’m not exposed to and include travel barriers as well, but for the purpose of this post I will not dig into that.

My list is relatively short compared to the majority of people who use mobility aids, and there is good reason for that. My barriers are different and I also leave my house *maybe* once a week.

Accessibility: Personal Limitations

  • I rely on furniture/walls around me to guide me when I walk. For a good portion of the time, I cannot trust my eyes to be sending proper depth perception signal back to my brain. I use my arms as a blind person uses a cane, and it guides me. I count my steps between various spaces and know exactly how far away one door frame is from the next. However, this doesn’t prevent me from walking into the door frames, or in the case of last week practically taking down my door frame with my right leg.
  • My illness is invisible and often not believed. I look healthy, I get it but I am far from it. My diagnosis, my approval to receive SS Disability Benefits, my giving up my life to get better don’t add up to convince everyone that my condition is valid and worthy of being acknowledged. I have doctors who don’t even believe migraines are real. I’ve spent 2 full months with severe abdominal pain an no healthcare assistance because in their eyes nothing should hurt. Doctors don’t all support me or recognize my pain, so how can I expect family and friends to?
  • I can’t just “unplug” from social media. I am home-bound. I often times cannot sit back and read a book – that requires too much concentration. I can’t just go do something or take a spontaneous vacation. I can’t always go outside. The few friends I have can’t put their lives and jobs on hold because I need to socialize. I don’t have work I can fall back onto. Most hobbies I have looked into are not friendly to my carpal tunnel syndrome and I really have no interest in doing something that will flare up more pain. I can change my social media, I can choose who I interact with and have spaces “tailored” to me, but unplugging isn’t really an option. If I unplug I have no connection to the outside world and minimal connection to part of my support system.
  • It is really painful to brush my hair. I mean I chopped off all my hair because my migraine attacks are that bad, but brushing it is not a task I look forward to.
  • I can’t trim my fingernails. Why they are so hard and grow so fast I have no idea, but trimming them is an hour long event that is regularly put off. It would be lovely if I could tolerate a salon have that salon just come to me.

At the end of the day, migraine makes most of life seem pretty inaccessible, especially in my case where migraine has stopped me from doing so many things.

There are so many areas of accessibility, and many of the “inaccessible” things I have touched on are not violating any codes or making life difficult for the vast majority. But it makes life difficult for me and others in my shoes.

Migraine makes me feel like I’m always running into another wall, and sometimes I quite literally am running into walls.

My accessibility needs really aren’t all that visible, but they are valid and deserving of being recognized. Often, these needs mean I live my life in a very different fashion that most people and simply practice avoidance of things that are inaccessible to me, but as my “personal limitations” shows, not all aspects of inaccessibility can be avoided.

“The disability is not the problem. The accessibility is the problem.” ~ Mohamed Jemni

A.

2 thoughts on “The Accessibility Thing”

  1. I have had migraine since puberty. 3 years ago they became chronic, just about every day. Nothing is working. People don’t understand how limiting migraine is. I walk into door frames all the time. I can’t pull coherent thoughts together, I simply don’t want to move an inch because it hurts. Daily activities are like an Olympic event… but there’s no gold medal when you manage to pull off a chore. One day a time. Thank you for putting this out there.

    Liked by 1 person

    1. I’m so glad it’s not just me walking into all the door frames! You’re right, so many things are like the Olympics – I was so excited today that I managed to trim my nails! To me it’s just the little accomplishments like that that mean the most. I’m glad this piece resonated with you. Sending you so much love, strength and support.

      Like

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