I know you don’t know me or what it’s like to be me, but you said so many things that simply don’t apply to me and, since you didn’t know part of me was an activist, you had no idea the education you would receive yesterday. But I’m not apologizing, I’m just explaining why you might feel a bit uncomfortable today. It’s okay, you can do want you want with the discomfort, but if you interact with me the same way next time, I will provide the same education and you might have the same discomfort.
Now, in case you are not the only person reading this, young person, let me share with the others what happened.
Yesterday was a rare day, a rare day indeed. I was able to go to a mall to get something for mom and me. Something we had a difficult time finding. And at that mall is a restaurant we both enjoyed when I was able-bodied. And we were passing that restaurant and I checked on my body and the time of day and thought, if the kitchen is on the ball, we might be able to have a meal there. So in we went.
Upon entering you asked if we were a party of two. I replied we were, but only if the kitchen is speedy today. [Note to PWD: If you say, ‘only if the kitchen is NOT slow’, they always lie, who wants to admit their kitchen is slow? So for all the PWD out there, try it the other way around, ask if the kitchen is ‘speedy’.]
Your reply indicated there was no wait and no backup in the kitchen. A great reply, it told me you really heard my question. As you walked us to our table, you asked if we had somewhere to go. I suppose this could have been a simple ‘yes’ or ‘no’ question, but not for me. I don’t have anywhere to go, and saying ‘no’ would have just been weird. It might suggest I was just in a hurry for no reason at all, which is not true.
So I let you know we had no where to be, but I live with chronic pain and my ability to sit at a restaurant and eat a meal was very limited, but we love this restaurant and are so glad we will be able to eat here today.
And then it happened…you replied, “I’m sorry.”
Just so you know, I didn’t think about who you are, or if what I was about to say would hurt your feelings.
When the activist in me turns on, I think about the folks I chat with each and every week who have chronic pain like I do and tell me they can’t see living the rest of their life like this.
They don’t really want to die, but they don’t know how they can go on. So let’s not bring euthanasia into this. These people are desperate to find a way to live without suffering as much as they do today, and my ability to help them would be a whole lot easier if certain things society tells us about pain and disability were never said because they are, simply, not true.
So let’s start with ‘I’m sorry’. What does that even mean? Technically, we could use Webster or Merriam to defend you and say it means you regret my loss or some action you took. So yes, I have lost things, everyone has, but I’ve gained things too (everyone has done this as well). And you haven’t done anything to me, so that definition doesn’t apply. I looked in the Urban dictionary, and the intent of your use was not there either. But here’s what I think you meant, “Holy shit, I can’t imagine how much your life must suck with pain and I am sure as hell glad I’m not in your shoes!” (yes exclamation point)
My reply, which I use when I am trying not to debate the comment was, “It’s okay, you don’t have to be sorry, you didn’t do anything and I am fine, really I am.”
You continued the conversation, saying you meant you just couldn’t imagine what I must go through and how difficult it is (see? my definition was right – you even said so!). I assured you, you were suffering more from what society tells you about me, rather than what it is really like to be me. That if you were in my shoes, you’d probably sort it out and make it to a restaurant once in a while too and have the burger you crave, that you know all your ‘organically’ inclined friends would assault you verbally for having if they knew, but they won’t, because you won’t tell them – which makes it twice as glorious because you are enjoying it and being naughty at the same time.
I thought we might be done then, but you stayed at my table and provided your closing remark, “You’re brave.”
NO! Able-bodied people please stop saying that – I’m NOT BRAVE! In fact, many of you will be in my shoes one day – and I don’t want you battling with whether to live or die because society has told you it requires extreme braveness to get through this life. It requires adjustment, yes – acceptance, yes – learning to look at your real self (and not the self huge marketing campaigns suggest we should be), yes. It requires we change how we see and feel about ourselves and shed all the ablistic, marketing bullshit we have been taught since we left the womb, yes. And that’s NOT easy – I know. Because I talk to at least one person who hasn’t sorted it out a week and they are thinking they can’t and it might be better to just kill themselves than to live out their future.
These are not people who have had chronic pain or illness very long. They are generally people who are new and haven’t figured out how to deal with an abilistic society which both pities them and makes their lives hard as crap believing so many are just ‘faking’ it.
There are some who, indeed, live thinking about death off-and-on for a long, long time. The impact of our abisitic society on them is enough to make me just throw stuff – it should have never been this way for them, even I got sucked into ablistic thinking. Abilism created this environment which asks us to change so much about what we were taught by society, loved ones, people on pulpits, leaders and so on. What every person must first overcome and unlearn when they become PWD or begin to have chronic pain or illness and is massive, and it doesn’t surprise me not all of us make it.
It’s not necessarily easier for those who are PWD or in pain from birth, given they are in this same society and constantly being told these sames things. At some point we must see ablism for what it is, or die.
This struggle requires we find folks who can see the ‘real’ reality of our situation – that we can live this way, we can be productive, we can love, we can have sex, we can trust, we are HUMAN in all ways and our disability and/or pain has not stripped us of any of this despite what society might tell us. So, yes, our lives are worth living and will have moments of great pleasure and moments of great pain (just as able-bodied lives do).
So dear young person in the restaurant, I don’t ever want to have to have a conversation with you where you are struggling against the ablistic ideas (which are pumping so strongly through your veins) that you think the proper option might be death rather than to reconsider those ideas and ideals. I don’t ever want your life at risk because society has told you my life is so damn awful it’s amazing I haven’t killed myself already.
The good news is you will most likely adjust to the life I lead when you get to where I am. And yes, most folks will be disabled or in severe pain or have some sort of chronic illness at some point in their life. You will likely experience this too. As we age, our bodies change the way they deal with stuff. And we, as a society, have labeled all these changes as negative in almost every case.
But you will survive these changes. You don’t really have a choice. Your brain is wired to keep you alive. And you have essentially two choices – one, work really hard to overcome a primal instinct which drives you to survive (this isn’t as easy as some think) or learn a new way of seeing yourself and your life, new ways of contributing to society (at least in some cases), new ways of working with others and asking for help without sacrificing your dignity or sovereignty, and likely a whole lot of other things too. And this isn’t easy, and we who have done it and are doing it, all know that.
But, it turns out, it is possible, and PWD and people with chronic pain and people with chronic illnesses can help you do this. Many are happy to be available to you if you can find them. That is, if you can get through the maze of able-bodied people who think they know what we need, and what to do, and how to help us. NEWSFLASH: Most able-bodied people have no idea what to do or how to help, and when they find this out they are often indignant, because they feel like they were doing so dang much for us and we are such ungrateful beasts.
Yes, beasts, we’re not human to them anymore, we are different, so I use beasts — and they hate that too. But when we tell someone how something feels, and they insist on discounting our feelings and suggesting their feelings and ideas and way are life are somehow more valid than ours, they are not treating us as human beings anymore.
It’s my effort at shock and awe to try to shake able-bodied people out of their incessant belief that their rights are more important than mine, that their feelings are more important than mine, etc., etc., etc. — “we are equals” able-bodied people. Especially in feelings, we are equals.
It would be nice if we could support each others’ feelings, but I can’t support feelings that will one day lead you, young person, to wonder if you should just kill yourself before you even take a shot at living life as a PWD or person in chronic pain or chronic illness.
I will not support feelings which lead people to a place where they think their only option is death. That’s not a choice, it’s a sentencing. (Please, this isn’t to suggest whether I support a person’s right to ‘choose’ to end their life, but there is a huge difference to me between having a right to choose and a society that leads people down a path of ablistic ideas and ideals which offer no other option than to kill one’s self before their journey has even begun. All the PWD and people with chronic pain and chronic illness who can see what-is-what understand this difference. Debate it here if you like, but I won’t engage because it’s not what this discussion is about).
And, to my able-bodied friends, and to you, young person at the restaurant, this is what your feelings do. They are a death sentence to many, and I don’t want them to be one for you or anyone else. My feelings, on the other hand, that I do have something to contribute; that, yes, my life has challenges, but so do most people’s; that I, with the right help, can overcome them as opposed to being drown by them–honestly, those feelings are more likely to save your life than what you believe today.
And for those who insist I am ‘brave’, let me explain what bravery is to me. Bravery is when someone, well, wait a sec, maybe Webster can help us here…Webster says this, brave as an adjective, which is how you all use it when referring to me, means: “ready to face and endure danger or pain; showing courage.” First I was not ready, I did it because my only other choice was to die and my instincts didn’t let me do that. I survived long enough to realize my life wasn’t as bad as all of you think it is. I survived long enough to meet others on a similar path who shared ways I could cope and get through life under these new circumstances.
Merriam provides the simple definition of brave as, “feeling or showing no fear : not afraid.” HA! I’m afraid on a regular basis – so that doesn’t fit either. Every time I stretch my perceptions of what my life is about, something in my tummy twists in ways only Hitchcock could make it twist! And that is fear, fear of change, fear of consequences, fear or retribution (because I live in a society that can change its mind about me at any moment).
Sadly, Merriam then goes an uses brave in a way that continues this ablist attitude, in the sentence, “He lost his brave fight against the disease.” I don’t know who this sentence is about, so I don’t know if they were really brave or not. I mean, they may have been, in some point in their lives, at a moment they didn’t have to act at all, done some thing brave. But fighting the disease, honestly, that is our natural response as human beings – you would do it too.
A fire responder who runs into a burning building to save an adult, or child or loved pet – that is brave. You couldn’t pay some people enough to risk their lives in that way. And society thinks fire responders are trained to do this, and that is true, but it doesn’t mean it’s safe, it doesn’t mean they’ll survive and it doesn’t mean they aren’t trained to know the reality of the situation all too well. They are even trained to come out of a burning building, to save their own life, instead of risking two people dying, themselves and the person they are trying to save. But some, well, some responders are so brave, they set these feelings aside and give their very lives for us. That is bravery. I don’t do that – I don’t go in burning buildings; I don’t acquire pains voluntarily to demonstrate how brave, or strong, or (insert odd adjective here) I am.
And one last thing on being brave, sometimes we do brave things – we have moments of bravery which are attached to a specific incident. And this is true of PWD, people in chronic pain and people with chronic illness. But if you don’t know me, if you are a stranger to me, you have no idea what those moments were or if I have even ever done a brave thing in my life.
So to you, young person in the restaurant, I’m just another person who really appreciates that you heard my request for a speedy meal and you brought me a speedy meal. Overall, your waiter made me feel comfortable and my experience enjoyable.
Most importantly, I’m not angry at you, I just want you to understand that words are super powerful for some folks new to my shoes – and some are more appropriate than others. But the fears you have about being in my shoes, those are yours and you can keep them, or you can learn from your interaction with people like me – it’s your choice. I hope you choose learning – it will make things easier at some point in your life – it really will.
Please understand, we as PWD, as people in chronic pain and people with chronic illness, we are also doing you a disservice every time we let these statements you make (which may one day cause you to consider ending your life) go without a response, without a re-assurance that it is not as bad as our ablistic society makes it out to be, that it is livable and we actually have fun and wonderfully enjoyable times, just as we experience other less pleasant ones.
Okay, I’m putting the soapbox away young person. I know, I am old to you and my soap box is a bore – so go live your life. I hope, though, when the day comes, you will remember these words, and when that happens, it’s okay if you look for me, or call me – I will do my best to answer you and help where I can and stand aside when you need me to and let you find your own way. You will stumble, yes. It will be hard, yes. But maybe just knowing you can ‘do’ this and ‘get through’ this will make it a wee bit easier. I hope so.