The issues I feel surrounding “ice bucket” and similar “awareness” trends

Many of you have probably heard about this new “ice bucket challenge” trend, which is to apparently raise awareness for amyotrophic lateral sclerosis, or ALS. Similarly recently there was the “no make-up selfie” campaign for breast cancer. I’ll make this point here at the beginning: 1. This post doesn’t concern everyone who did the challenge and donated or shared information to raise awareness. 2. I’m not ungrateful for the money that these campaigns do raise. I’m not just shitting on people who did this, but hopefully some will see the issues behind it that some of us in the disabled community finds and finds uncomfortable. Others do share my views, but everything in this post is written for my two cents on the topic.

I think my first point is that many people are doing this under the guise of “raising awareness”. Naming a disease does not contribute much to awareness, which is so much than knowing a disease’s name and that it exists. If you’re fundraising, then call it that! Fundraising itself isn’t a bad thing, but it’s not the same as raising awareness. For the breast cancer selfies and various other breast cancer campaigns, what does naming the disease tell anyone? I know many people *did* share information, such as information about the disease itself but also how to check your breasts for any changes and so on. This is good! That is raising awareness! Not everyone who has taken part in these trends comes under the group of people simply taking part in a trend and feeling like they’ve done something.

But some do. Day in, day out, we disabled people deal with so-called allies like this, people who make out they’re “on our side” and are fighting the fight with us, but when push comes to shove, they’re nowhere to be seen. When we tell them that something they’ve said or done is problematic, unlike a true ally they switch off from the conversation and take offense, instead of listening, apologizing, and doing all they can to change the way they think about that particular aspect. They are in it for the “ally cookies”; they do a little bit, feel it’s enough, but then when they’re called out, apparently one disabled person whom they saw as rude is enough to have them give up for the entire community. Not exactly an ally!

There’s no doubt that not everyone doing these trends are ableist or false allies. I’m not saying that, and if you think I am, you might as well stop reading right now. In case anyone would like to derail this, I will state here, in bold, that these campaigns *do* raise both money and to a smaller extent awareness. But to me there are broader issues. Most people, if not all, doing these trends have good intentions, but there’s something in there of people getting their kudos for doing something against diseases but then not actually giving a shit for its sufferers right here, right now. There is a focus on treatments and hypothetical future cures–which of course we all want anyway–but then the same people don’t care for the disabled community as a whole around them. And I think that’s why these things make me uncomfortable. I don’t doubt there are people who have done this challenge who have or will still go on to make fun of Stephen Hawking, who has ALS. Many of us in the disabled community will tell you that while we are disabled by our diseases, issues of ableism make our lives more difficult in many aspects, so there’s something off, to me, about people joining these trends to do their little bit for these diseases, but then continuing on with gross ableism and not actually caring about sufferers or the disabled community beyond that.

If you think this is me not caring about research, then you’re wrong. As both a lupus sufferer and an anatomist, I know how vital research is. I know it’s not just millions of pounds going into vague research ideas about a cure that may or may not exist. My issue is not with the researchers, nor the charities raising money for research, nor the people who do care beyond the trends but who also have contributed to them. If you’re still getting this message, I can’t help but feel you’re plugging up your ears saying “la la la” because you feel you’ve done a good thing by contributing to fundraising and awareness; you have. Believe me, I’m fully aware that there may be no cure for lupus, but I know that research is about more than just a possible cure. If there was a trendy campaign for lupus, I’d be grateful, both for the money it raises and for the awareness, even if small. I’ll spell out again that I’m not saying these campaigns are useless, nor that they don’t do what they’re designed to do, again, even if lacking on the awareness side. The issue to me is people thinking that they’re not ableist or that they’ve done all they need to do by joining a trend and giving a few pound to charity. I’m aware we can’t do everything, we can’t campaign and share information and fundraise for every possible disease.

It’s not that the research shuns the living community in favor of a hypothetical cure. It’s the false allies who do, and it’s the false allyship that I have a problem with. It’s a sad fact of life that disease research needs so much money–big pharma etc. is another issue altogether. I guess this whole thing is less about the trends themselves and more about false allies, or people who don’t actually care about ALS but who just want to jump on the latest trend. <strong>If this doesn’t apply to you, then I’m not talking about you.</strong> I’m not saying we don’t want your money either–hell, I’m grateful for research money wherever it comes from, as, cures aside, research leads to new treatments that greatly improve the quality of life for people suffering all sorts of conditions. But remember that supporting the disabled community goes far beyond giving money for research, and if you don’t care beyond the faceless name of a disease and its possible cure, definitely if you’re ableist in any way and would use the fact that you did donate to derail all of these arguments, then just know that you’re not helping the community as much as you think. In any social justice fight, I’m aware that we do what we can and often that isn’t a lot, but I won’t stand for the way so-called allies try to force us to feel grateful for a tidbit, for scraps, while they continue ignoring the disabled community, people who basically say “but I said something good against ableism, you can’t dismiss anything else I said”, and believe me, I’ve had those. It’s not a case of saying everyone has to suddenly become advocates of every disease and that the general public doing a little bit here and there isn’t effective. It’s a case of the people who shoot us down, derail us, basically tell us we’re wrong about our own experiences while claiming kudos because they fulfilled some trend for some disease at some point.

Caveats. (Fairly intuitive, I’d think, but there’s always someone who misses chunks and will shoot me down for being ungrateful.)
1. I don’t speak for all of the disabled community, obviously, and not for those with ALS.
2. Any offense on my part is not geared toward everyone who took part or everyone who is grateful for these campaigns.
3. I’m not saying we can’t all do our little bit and dismissing you because you’re not a full-time disability advocate.
4. I’m not saying that everyone who messes up and says something ableist is a false ally.
5. Finally, what I call false allies is not always people purposefully just jumping on bandwagons and wanting kudos when they know they blatantly don’t care. Often they have good intentions but again and again derail and silence disabled people on disability and ableism in general in favor of their own views.

Some links about ALS:
http://en.wikipedia.org/wiki/Amyotrophic_lateral_sclerosis
http://www.alsa.org/about-als/what-is-als.html
http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_ALS.htm
http://journeyonwithroyce.blogspot.co.uk/
http://thealsexpress.com/my-blog/
http://health.ucsd.edu/specialties/neuro/specialty-programs/als-clinic/als-resources/Pages/meet-patty-blake.aspx

Recent doc visit + busy week

From last night’s post, it possibly seems that I’m in a worse place than I am. I’m still absorbing the news, and it’s also hard when suddenly mental illness and suicide are thrown into the spotlight like this. I’m doing o.k. just now, feeling that I’m wobbling on top of the slippery slope; it might happen, it might not. So I wanted to give a general update on my physical health now.

Last week was pretty busy for me lately as my health’s worsened. I think I did three or four days in a row out. Monday the 4th was my nephew’s 2nd and my dad’s 52nd birthday, and we had a party in a room at a local pub with a bouncy castle for the kids. Although I didn’t do much physically, it’s quite striking how much a day out can take out of you! Even just using sticks to get around is so taxing. I managed to volunteer the next day too, which was great. I think it was a few days after that I finally snapped and tidied up my bedroom; my sister was changing to half-day shifts that week, but for some reason I just decided I couldn’t bear it any longer. Big mistake! I was soaked to the skin with sweat, popping painkillers, ooh, I felt it badly later. The day after or so I went grocery shopping, thinking because I’d be in the chair it wouldn’t be a big deal, right? Ohhh! Maybe one day I’ll finally learn! I used the store’s chairs, even though they’re not as uncomfortable, so that we’d actually have space in the car for the shopping instead of my own wheelchair. But even the walk with the sticks into the store… ouch! At least I made progress with the bedroom, right?! As I share with my twin, there really isn’t enough space for two people’s stuff, so we’re trying to organize everything, but it’s difficult as there’s just no space. Hopefully this means I can sort my desk out soon though and have a workspace again.

I can’t remember when I went to the doctor, but at least I got everything I needed sorted out. I got my pills changed over from co-codamol to dihydrocodeine, as I just feel the latter works better for me; I wasn’t positive whether it was to co-codamol causing the nausea, but I do tolerate dihydrocodeine better, I think, also it means I can still use the paracetamol as a baseline, even at times I don’t need the opiate dose. Fingers crossed it works out better anyway; the co-codamol wasn’t too much of an issue, though. I’m actually still finishing some of it that I have left. And, because taking opiates regularly and long-term slows the bowel, I got some laxative sachets just in case; recently, I had the worst, worst constipation I have ever endured–pain sweats, agony, thought I was going to faint, the lot! Luckily(?), because of my IBS, it’s not something I have to deal with too often as I usually have the opposite problem of diarrhea! But it’s nice to have the sachets ready just in case. I explained to him about my sinuses, and I’m trying a steroid spray for two months, and we’ll see how it works out. I can’t say I’ve noticed a dramatic difference, but my sinuses had been relatively calm around the time I started with the spray anyway.

Nothing much else to report! I’m getting on with transcribing, translating, reading and accumulating too many books. Very soon I have to start putting everything into motion to getting back into uni for my masters in 2015. And soon I also want to start again in earnest on a physio plan, something small enough that I can manage consistently.

TW: mental illness, suicide.

TW: mental illness, self-harm, suicide

I haven’t written here for a while now, but I will get onto the general update posts after this one, as I just feel I need to get this all out. (It ends up quite long, and me somewhat rambling about mental illness in general.)

Most of you have possibly already heard the awful news about Robin Williams, who has apparently committed suicide. As I’ve been feeling on the brink of a self-harming relapse for a while recently, this has really hit home to me that some of us really are “lifers” in depression. We get over episodes and feel good, but down the line we don’t know how bad it might get again. I’m somewhat come to terms with this in general, but it’s still hard, of course. So, I just want to use this space to get out everything I need to, and I hope that people don’t see this as me trying in anyway to hijack and derail this tragedy. I hope Robin has finally found peace and he and his family are in my thoughts. I hope to find strength from the loss of a fellow warrior, and I hope that the rest of you in this fight can too. I just want to write this mostly as catharsis for me, but also to educate people some more on what it’s like to fight this, to suffer from mental illness, because, while I haven’t seen any horrible comments relating to Robin, I know that they’re most likely out there and I probably will come across ignorant comments, some intentionally vile, but some from ignorance. I’m trying to fill that void of ignorance for those who are willing to listen.

I’ve suffered from depression and self-harm since about age 10, and I’m what I call a “lifer”. While therapy, medication, and simply time can help in a specific episode, I inevitably will relapse later down the line. I’m aware of this, it’s been happening for more than half my life, and in some ways I accept it. It’s been easier to deal with knowing that a relapse is inevitable; I feel more prepared and feel I can be more open about it than if I and my family pretend that I’m “cured” after an episode wanes. Right now, I am recognizing the signs, and it may or may not turn out to be an actual relapse with harming; sometimes it passes, sometimes I pass an invisible line without having actually harmed again yet where I know I can’t stop it. Maybe it sounds defeatist, but knowing you’re relapsing with a physical illness doesn’t stop it happening, rather it makes you more prepared to deal with it. And as I often say, I’m a proponent of the fact that mental illnesses are physical illnesses that affect mental processes (and often physical ones too actually).

In psychology, I didn’t find therapy helpful for a long time because we were pretending, basically, that I could end the cycle through changing the way I think alone. Well, part of my therapy was to accept that negative things happen in life, and so by a certain point, I told the therapist that this was also something I needed to accept to be able to cope with it: my mental illness, just like my physical, is incurable. I will have good days and bad days, good months and bad months, but I must always be prepared somewhere in my mind for a relapse. Same with the lupus: I spent a lot of time deluding myself that it wasn’t going to get worse, that somehow someday I’d have my old life back. Well, all that did was cause me more upset and disappointment, waking up to find that I wasn’t better, that I was sometimes worse. Coming to terms with the lupus being permanent helped my mindset a lot, and so did the acknowledgment that I was never going to be completely “cured” of my mental illness either.

If you don’t suffer from any form of mental illness, or not so chronically, it can be hard to imagine being in a state of mind where self-harm or suicide seems tempting. Believe it or not, in my good phases, I also can’t imagine wanting to cut, enjoying that pain. I think of some of my worst wounds and cringe hard. I think “How could someone do that to themselves and be able to bear the pain and the gore?” Because to do these things, it needs a certain mindset to do it. It’s not the case that when you’re feeling absolutely amazing that you just think one day “Hmm, I think I’ll cut or kill myself”, even if it seems that way to outsiders, although episodes can come on so suddenly during what you thought was a good phase: my worst wounds, where I was hospitalized, were inflicted the very day I graduated from uni. But even from the graduation to the harming, a swift change of mindset took place. Darkness had settled in.

People have called those who attempt or have committed suicide cowards. They say things like “man up”, that everyone goes through shit and that people should just hoist themselves by the bootstraps and cope. I’m a believer in optimism, and a good attitude can take you far, but it is not miraculous: optimism isn’t going to magically sort out the biochemical imbalance of my brain or indeed cure my lupus by altering my immune system so it stops attacking my own body. If you’ve thought something along those lines, that suicides or harmers are attention-seekers, cowards, that you think they’re beyond help, try this: imagine a bad day you’ve had, a day where for no pinpointable reason you felt inexplicably sad, angry at life, apathetic, perhaps, where nothing seemed to go right, or even though everything was going right you still felt this way, when it should have been an easy case of you saying to yourself “just cheer up, have a positive attitude”. It didn’t help? Sometimes it doesn’t. Sometimes there’s absolutely nothing you can do on a day like that except let it pass. Now imagine that bad day stretched out over weeks, months, years, with no end in sight, and no matter what you do, that darkness, that cloud just doesn’t let up. Would you be a coward for wanting that to end?

I do have days where kicking myself up the bum helps. I have days where I’m moping about and changing my attitude changes everything. But that’s not what I’m talking about, and that’s not what depression is.

Now, it’s not always so explicably constant for people. Many people with depression have amazing days, have weeks or even months where they are, to all outward experience, just fine. I’m not talking people putting on a mask, although that’s a whole other problem. I mean that even while depressed, people can actually have good days. Take grief for example, which is a kind of depression in a way; people grieving have days even in the midst of their grief where they genuinely enjoyed themselves and generally forgot about the loss. Because people with depression can have those intermittent days, or indeed long gaps between episodes, people often thinking we’re not as ill as we make out. Often when people commit suicide, friends and family will say “But they’d gotten much better”: sometimes this apparent improvement is a result of the decision of suicide, which often takes the weight off someone’s shoulders, removes their burden, but also sometimes someone did genuinely get better from an episode and then relapse, which the family doesn’t recognize because if you’re better, then you’re better, surely?

A friend of mine has recently been feeling generally down and dissatisfied with life. When I suggested to her that she was depressed, she said she had considered it, but she had decided she wasn’t, not because things didn’t point to that, but because she had been made to think that being depressed meant constantly crying, not being satisfied with any part of your life. I told her that personally I never cry for myself–mind you, I think part of that is due to having hidden my true feelings, mental and physical, for so long–and that doesn’t mean much in terms of whether you’re depressed or not. I explained to her that many people go through it for a relatively short time; if she’s depressed now, it doesn’t mean she has always been or always will be. But some of us are lifers, and it’s certainly not due to a lack of strength.

This has gotten very long at this stage, and I’m not positive exactly what I wanted to say with it. I just feel that people who are most dismissive of disease, whether mental or physical, are people who complain most about the little things in their own lives. I’m not saying that people can’t complain, but when you act like the world is over because you had one shitty day and then dismiss people who go through worse every single day, it’s kind of crap. Some people make ableist and ignorant comments based on just that, ignorance, but I’ll know the difference when someone make the effort to listen to me and try to understand and makes an effort to change their thinking about mental illness, their ignorance. So often with disability and ableism in general–in fact, in any social oppression issue, really–I’ve had people who think they are “allies”, they try to support the disabled community, but when one of us comes along and says that they’ve said something ableism or that we find an issue with, they often walk out of the conversation, acting like a rebuked child, thinking it’s unfair because they show support for us and we “pick holes in it” or something. Those people are not true allies. On the other hand, I’ve had people, including my twin sister, who’s been there for all my life through my struggles with physical and mental illness, who say ableist things, and then when they’re called out on it, they apologize sincerely and take it on board to try to adapt the way they think about disability and mental illness, which they have no first-hand experience of.

Basically, I’m just asking people, if you haven’t experienced this first-hand, don’t jump to making ignorant or mean comments about Robin Williams or any other sufferer of mental illness. Read and listen to our words to try to understand what it is we’re going through and how you can help. I understand, it’s awkward for you. I can think personally where I’ve been comforting friends who are going through tough times, and I know that sometimes you don’t know what to say. You’re afraid of saying the wrong thing. Listen to your loved one and try to engage with others’ experiences, particularly online, and if you do say the wrong thing and are called out on it, apologize, take it on board, and don’t make the mistake again. You don’t have to have a degree in psychology or psychiatry to support people with mental illness: mostly we just want to know that people are there for us if we need them. Don’t get offended if people then don’t vent to you or confide in you; don’t get offended if your partner or friend or family member is still struggling no matter how much you help, don’t get offended if you get called out for saying the wrong thing or something ignorant or ableist, no matter your intentions, because out of being told you said something insensitive and being dismissed or hearing a cruel comment when you’re trying to fight this, I think we know what’s worse.

Just remember your own bad days and consider how that must be to cope with, day in, day out. Don’t blame us; be there for us. You wouldn’t blame or dismiss a relative with cancer; you’d probably do whatever you could to support them and make sure they’re comfortable. Well, it’s not all that different, really. The main thing is try, and if you’re wrong, adapt.

I hope that Robin Williams is at peace, and I hope that those of us still here in this fight can find strength. I’m hoping I don’t continue down this slope to a relapse, but I know I might. And I know that even if I don’t fall down it this time, there will most likely be a next time. Yes, I am a “lifer”, and it’s scary to think that at any point in the future, I could go back to my worst place, I could find myself in Robin’s position. And so I believe in being as open as I can about my struggles–that doesn’t mean during my episodes, I can talk to family for example about my thoughts and worries, because I most often can’t, but I won’t be ashamed to stand up and say that, yes, I suffer from depression. Yes, I take medication for it. Because if we’re going to help those with mental illnesses and prevent people from taking the final step in removing themselves from their pain, I believe we need openness and understanding; many of us have hidden our struggles because we don’t want to hurt loved ones or make them angry, and suffering in silence is one way to worsen it, to let it progress, sometimes to a point where it’s too late. Please support your loved ones in this fight, even if you can’t understand it fully. I personally have found the panicking about being caught harming worse or just as bad as the feeling that drove me to it, and being able to say to my sister, yes, I did it, and make sure the wounds are cleaned and uninfected, has helped me beyond words. It doesn’t mean she “lets” me do it, it doesn’t mean it doesn’t upset both of us, but bear in mind that guilt is often the strongest emotion in mental illnesses, and is often the one that leads to suicide, so please try not to produce even more guilt in us by blaming us or getting angry with us.

RIP Robin, and all the other warriors we’ve lost.