Ableism: Do We Really Need Another "-ism"?

Ableism: Do We Really Need Another “-ism”?

I’m not crazy about the idea either, but it’s happening. It’s always been happening, and we might as well give it a name.

Living with an invisible illness

Even if you aren’t unable to work and officially declared disabled by the government, if you suffer from an invisible illness, you know what it feels like to be misunderstood and disbelieved regarding your disorder and its symptoms. A boss who rolls her eyes and suggests you take a Tylenol? Ableism. A brother in law who refuses to extinguish his overly-aromatic Pumpkin Spice candle on Thanksgiving because “it smells fine” to him? Ableism. The most odious forms occur when those in wheelchairs or with assistance animals (for example) are dismissed as though their comfort and access don’t matter, but it’s just now being recognized how much those with invisible illnesses are maligned as well.

Migraine and anxiety

The youth theatre group for which I’m on the board of directors recently had a change of leadership. The secretary, whose responsibility it is to contact the companies who own the rights of the scripts and scores we need to put on productions, works full time and found herself making the calls while driving to meetings or picking up her kids, because the companies representatives are only available during regular business hours. She needed help with that part of her job, and I seemed like an obvious choice, since I am, you know, home all day. I thought I had told the secretary and new president how bad my phone anxiety has become, but still, an email arrived the other night asking me to be the one to take on making those calls. My heart sank.

Behind the scenes

While the new president is a good friend, I wondered how he pictured my daily routine, if he thought about it at all, and if that image was a realistic one. Yes, I work from home, when I can, but most of the time I’m resting in bed, exhausted; in pain and unable to be active; making and keeping medical appointments; organizing medications; and filing paperwork. Once I pick up my daughters from school, I want to spend time with them and often, nearly every night of the week in fact, I am driving them to dance class, or riding lessons, or play practice. What I am not doing is lounging on my couch eating ice cream out of the carton, binge watching the new season of Stranger Things, and desperately wishing I had something real to do, like making phone calls to strangers.

Speaking up

One thing I have learned from having migraine disease, applying for disability, and dealing with unpleasant doctors is how to advocate for myself. I knew that making those calls would be so difficult as to cause serious anxiety, and I would dread each one for days, and my brain fog or pain would make it nearly impossible to communicate with the stranger on the phone. So once again, I explained that I have severe phone anxiety and not as much time as it might seem. The forthcoming reply still did not accept my hedging; he suggested that I meet with the secretary and just give it a try.

The misconception of staying home with a disability

Frustrated and concerned, I let that email sit a while. I have always hated confrontation, and saying no to people I like, especially when the request is perfectly reasonable. I talked to John about it, and my older daughter, and both told me to not give in. John sighed and said, “Ableism.” I said, really? You think? He said, “Absolutely. They think because you’re home all day, that all you have is time. They don’t understand that having a disability is a job.”

Standing my ground

In the end, I sent one more firm email in which I explained how my days go, again discussed my brain fog and phone anxiety, and finally, firmly said NO. “If migraine disease has taught me anything,” I ended the email, “it’s how to advocate for myself.”

So yes, ableism exists, and can come from the most unexpected people. My friend immediately responded that of course he understood and I didn’t have to be the one to make the calls. I felt very proud of myself. In a way, all we can do in response to those types of assumptions is to explain, educate, and always advocate.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (11)
  • Lee614
    9 months ago

    I can’t call my mother anymore because she is hard of hearing, and I have to yell for her to hear me. My head hurts terribly afterwards. I told my brother about it, but he said it shouldn’t stop me from calling her. I had phone anxiety for many years after my younger brother was in the hospital for 3 months before he died. Every phone call made my heart skip a few beats because I was waiting to hear the bad news. It’s not so bad now, but I still don’t like talking on the phone, and I often use the speaker to make it more like a conversation.

  • Elizabeth Roberts-Zibbel moderator author
    4 months ago

    Lee614, that’s a good idea, to put your caller on speaker! I might try that 🙂

  • Ellen H
    1 year ago

    Another commenter used the term, Phone Anxiety. “…every time that phone rang my heart rate would skyrocket.” I have lived with this for decades. NOBODY understands!
    But I feel like someone has hit me in the chest with a hammer. My heart rate skyrockets. And it hurts. I have an answering machine. And still, people complain that they cannot reach me immediately! One person calling me said, don’t you have a cell phone?! I assume that means that I should be carrying a cell phone with me on my person and answer that call, right now, immediately, within nanoseconds, …. I didn’t know there was a name for it. I think it started when I moved away from home and my parents called me often, and often had something to complain about, and there weren’t any answering machines back then, way back….. It certainly upsets the headaches and makes me very stressed out. Is it part of migraine or coincidental with migraine? And … The word Ableism is a new word to me too. I have had to learn to advocate for myself, even with my own family. Living with migraine is a “job.” I spend a lot of time just being careful not to set one off. Thanks to all of you who participate in this website.

  • Elizabeth Roberts-Zibbel moderator author
    1 year ago

    Thank you to you too Ellen! Just yesterday my husband casually asked me (via text) to call Zo’s school about something. Such a simple, innocent request, but resting with a migraine I actually started crying because I JUST COULD NOT. I don’t think he realized quite how severe my phone fear had become. He made the call. Now tomorrow I have to call to make 2 appointments and schedule a mammogram and I’m already upset about it – but i’ve been putting it off too long.

    Good for you for learning to advocate for yourself! It’s such a challenge sometimes.
    Take care,
    elizabeth

  • parmes
    1 year ago

    Yep yep! Sorry to keep popping in but, yeah. Phone anxiety is just what I’ve called it my whole life. That feeling when your heart immediately jumps up to your throat and stays there through the whole conversation, so (for me at least) vocal chords are tight and squeaky… I don’t answer numbers I don’t recognize, and even most numbers I do I debate until the end of the ring and call them back myself. More control that way. Plus my cell phone has this nifty thing called “visual voicemail” where it turns my voicemails into texts. So that’s cool. I mostly just try to convince everyone in my life to text me. Conversation over the phone hurts, you know?

  • Elizabeth Roberts-Zibbel moderator author
    1 year ago

    Ellen, the transcription is *amazing*. Some of the words don’t quite translate, but you can usually get the gist quite well. I believe Apple has it in Beta (still being tested) and I must have gotten lucky. If you are getting a new cell phone I would definitely ask about it when purchasing! And Parmes, I do exactly the same thing with calling people back for more control and never answering numbers I don’t recognize. Thank you both for reading and commenting! ~elizabeth

  • Ellen H
    1 year ago

    Phone conversations do hurt. After spending time on the phone, my head feels like my brain is banging around inside my skull. And then, I just want things to be really quiet. Oddly, having NPR on gently is kind of soothing. Maybe it acts like a buffer for all the banging around in my head. Thanks for your thoughts. EH.

  • Elizabeth Roberts-Zibbel moderator author
    1 year ago

    Ellen, thank YOU for being here and sharing your own issues relating to my story. YES! Phone anxiety! Unless it’s one of my daughter’s schools, my partner, or my mom I DON’T answer. Now that Apple has a transcription for voicemails I don’t even listen to them, I read them. TEXT ME. Today to call my neurologist’s office I had to pace around rehearsing what I was going to say for awhile and then put on my 12 year old’s hat to channel her brave spirit. Ugh. So glad i’m not the only one! ~elizabeth

  • Ellen H
    1 year ago

    “Apple has a transcription for voicemails…”

    A transcription for voicemails!!!!!!!!!!!!!!!!!! Can I get this for my new cell phone!?!??!?

  • parmes
    1 year ago

    For what it’s worth, me being a stranger… That is a HUGE victory and you should be proud. Pat yourself on the back and make yourself a nice cup of tea from me because you deserve it.
    Phone anxiety is so hard to fight. Even worse is the anxiety that comes from the possible confrontation of telling someone that you won’t do what they want you to do. And you did it!
    I worked for a crisis line at a youth homeless shelter for 2.5 years, and every time that phone rang my heart rate would skyrocket. I came home with level 9-10 migraines at least 2x a week and had to eventually stop working there because they refused to give me one extra shift a week, which would’ve made it possible to get health insurance. No insurance and the anxiety levels of the crisis line just weren’t worth the fulfillment I was getting from the the nature of my work. Add my pain levels, and you’ve got a quit job. Sucks.
    Back to you… Again, might not be much, but this guy’s proud of you! Keep on!

  • Elizabeth Roberts-Zibbel moderator author
    1 year ago

    Oh my gosh, thank you parmes! That really does mean a lot. Working for a youth homeless shelter crisis line… GAH. How amazing of you to do that! I can’t imagine how you did it so long. I really appreciate your comment(s) – they’re all good! – and your support. ~ elizabeth

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