Crowded subway train.

When an Advertisement Treated My Disability as a Joke


It is not easy to navigate London with a disability, as any disabled Londoner will tell you. Accessing most tube stations requires walking up and down stairs, passengers with prams and extra luggage often take up spaces reserved for wheelchair users, and there is an overall hurrying mentality that means anyone traveling slowly is met with groans, rolled eyes and sometimes even pushing and shoving. I am often made to feel like a nuisance just for leaving my home.

Recently, I was also made to feel like a joke.

While on my way to a hospital appointment, I noticed a poster imploring passengers on the tube to “Please give up your seat for those less able.” At first, I was encouraged, and then I read on:

“Please give up your seat for those less able. Like bad sleepers. You have to pity those poor souls who didn’t sleep well last night. But you don’t have to be like them. The Eve mattress is made with next-generation memory foam to provide the perfect bit of shut-eye. No lumbering around like the walking dead for Eve fans. No desperate search for a carriage with a seat. Just a more alert mind and body. Everybody deserves a perfect start to the day. Start by going to our website. Tap in START for your £50 off and your 100-night trial will begin within one day. Which is round about the same time your perpetual lethargy will end, coincidentally. Everybody deserves the perfect start.”

It’s hard to explain just how upsetting this was to read. I have myalgic encephalomyelitis, also known as chronic fatigue syndrome. It can be very hard for me to get a seat on the tube sometimes, even though I need one, because I don’t look disabled. Until TFL rolls out their much anticipated “please offer me a seat” badges, when there isn’t a seat, I have to decide which person in the carriage looks least likely to argue with me about whether or not I’m disabled. This is a very real fear. On the basis of exactly no expertise whatsoever, many able-bodied people appoint themselves as arbiters of disability, confronting people like me when we use the elevator, park in a disabled space, or even ask them for a seat. Sometimes these confrontations can turn violent.

Society is largely oblivious to the everyday experiences of disabled people like me. The people at Eve Mattress certainly seem pretty oblivious. An able-bodied passenger’s search for a seat isn’t really desperate, but mine is. Sometimes that last seat is the only thing that will stop me from collapsing.
Here’s the thing: having a bad night’s sleep does not make you disabled. Needing a new mattress does not make you disabled. Being tired is nothing like living with CFS. I’m not just “tired:” I have chronic pain and chronic fatigue. My mobility is restricted; some days I can’t stand. I am often to be found “lumbering around like the walking dead,” but my “perpetual lethargy” will never end, coincidentally. One bad night’s sleep does not come close to a lifetime of fatigue, and it is offensive to suggest that it does.

Either Eve Mattress were deliberately intending to hurt and insult disabled people like me, or more likely, the thoughts and experiences and inner lives of people like me are something they never stop to consider. Both of these possibilities are ableist, but the latter is subtler, more insidious and deeply entrenched in how we think about what it means to be human. Far too often the disabled are left out in people’s thoughts, just as we are shut out in real life by doors we can’t open, stairs we can’t climb, or those who refuse to make room.

To the able-bodied, I say: I’m not an inspiring quote to put on a poster, or a sob story that makes you feel better about your life, I’m a person. I don’t want your “pity,” and I certainly don’t want you to laugh at me or at people like me. I want you to treat me with the dignity and respect you expect to be met with yourself; I want you to change the way you think about disability, and listen to disabled people when we tell you that you’re wrong. I want you to be outraged at the prejudice and the scorn we live with every single day. And, yes, sometimes, I want you to let me have your seat.

A complaint about this advert has already been made to the Advertising Standards Authority. If you want to complain, I suggest you contact Eve Mattress, or call them out on social media.

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How Chronic Illness Has Changed My Life for the Better


I could easily list all the negative aspects of living my life with chronic illnesses but I don’t like to focus on this too much. You may think there are no positive aspects to living with chronic illnesses but there are, and I want to tell you how they have changed me as a person.

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So to my friends, and to those helping others fighting against the all consuming monster that is fatigue, here are some thank yous I’d like to share:

1. Thank you for understanding why I cancelled on you…again. I know it can be last minute or might not make sense when I managed something the day before, but thank you for knowing I wanted to be there and didn’t have a choice.

2. Thank you for continuing to invite me to things. Thank you for not giving up on me and knowing that if I can I’ll always be there.

3. Thank you for sending that message to let me know I don’t need to worry. I’ll still feel bad for letting you down, so it’s nice to hear you tell me it’s okay and you understand. It means I can switch off and rest.

4. Thank you for knowing when I’m just not myself. I know sometimes you can tell just looking at me or if I’ve gone very quiet. It means a lot that you know that version of me isn’t the real me.

5. Thank you for knowing sometimes I need quiet and sometimes I need your energy. It’s so great that I can let you know what I need and you accept it even if it can seem contradictory at times. You know sometimes I can kick-start myself again by feeding off your conversation and energy and other times it can all just be too much to cope with.

6. And to those who talk openly about their experience of fatigue, thank you for sharing when you feel the same way. I read your updates and blogs about fatigue and I’ve seen your comments on mine saying you really do get it, and I know you do. It makes the world of difference to know I’m not alone.

One of the reasons I started my blog at www.happybarnet.com was to be more open about my experiences with conditions like fatigue. I appreciate they won’t be the same for everyone else, and for posts like this, I hope you understand all I can really do is share what I know myself.

And now, I’m off to rest up for a bit.

Love, as always,

Barnet

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You can follow Laura’s journey here.

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