Taking one for the team

Three things have happened recently:

New statistics about disability hate-crime

I listened to a brilliant radio programme on 5 live, highlighting the new information that police are failing to recognise attacks made on disabled people as hate crimes. On many occasions, disabled people have been targeted simply because of their disability, but when the crime is recorded that information is missed out. It’s significant for two reasons – one is that for disabled people an attack may take far longer to recover from because of their pre-existing condition – but the other is that, along with racially-motivated crimes and others based on a person’s protected characteristics, disability hate crime carries heavier sentencing than an equivalent assault carried out at random. The programme stated that society is at the same place now with disability hate crime that we were with racially-motivated crimes 21 years ago, before the murder of Stephen Lawrence.

It’s completely usual to experience ableist abuse or attitudes every time you go out. But culturally, people don’t currently stand up for the disabled person being insulted in the way that they would if, for example, racist or homophobic abuse was taking place. And often people are unaware that language being used is offensive – there’s a lack of education in the population at large as to what constitutes inappropriate behaviour.

The programme is available on iPlayer here: http://www.bbc.co.uk/programmes/b04hmrv1

The homophobic hate-crime story on Doctors

Don’t judge me, I watch Doctors. A current storyline is that of Mandy, a nurse in the regular cast, and Catriona, a woman she meets at a nightclub.  As they’re leaving the club, they kiss in the car park, and a gang of girls shout insults at them, calling them disgusting. They wait until Catriona is leaving, alone, then surround her, drag her to the ground and begin to beat her up, until Mandy steps in and stops them. She’s left hurt and shaken.

That’s alarming in itself, but what’s more worrying is the attitude of those they speak to afterwards. The club bouncers don’t help to patch them up or call a taxi. The police don’t believe their story, putting it down to a bit of argy bargy at chucking out time, rather than the hate crime it was. They hold Catriona as responsible as the gang for provoking the assault, and say that as her injuries aren’t very serious, the crime’s not worth pursuing.  The hate crime unit are nowhere to be seen.

Experiencing aggression at church

On my first week on the welcome team at church, I was chatting to a new person after the service, and when we’d talked a while, was taking them through the crowd to meet one of our staff. At this point, a hand tapped my wheelchair. “You, stop, what do you suffer with?” the man said, aggressively positioning his body across mine, so I couldn’t move forward, and his face was bent over me, inches from mine. “I don’t ‘suffer with’ anything” I said. “You know what I mean, why are you in a wheelchair?” Slightly taken aback, I said “I don’t discuss my medical information with people I’ve never met.” “So there is something wrong with you… you have to take this.”

He forced a ripped piece of card at me. “I don’t want to take that, thank you.” I said. He said that I had to go to this website, and I had to take the piece of card. By this stage he was getting more aggressive and I just wanted to get away – the new person I was “welcoming” was growing increasingly uncomfortable. It was clear he wouldn’t let me move until I accepted his “help”. I took the card, and got away as quickly as I could. It contained a URL, an email address, and some other writing. I put it straight in the bin.

Concerning. Concerning that he had those preconceptions about disability. Concerning that nobody stepped in to check I was ok. When I mentioned it to one of the elders, he said it was good that I’d been the one to speak this odd visitor, rather than, say, a fresher student. I’d protected everyone else from having to talk to him. But that day at church, I was the only visibly disabled person there – of course an ableist was going to single me out.

But how does it make you feel?

The incident at church was ten days ago, but I still feel pretty shaken up. I’ve had nightmares. I purposely keep my push-handles tucked away on my chair, so that I can’t be tipped over, or pushed when I don’t want it. But in the nightmare, the man gets increasingly aggressive, and pushes me to the ground. I get surrounded. When I’m asking for the police to be called, the crowd are telling me to forgive him and to stop being a victim, and I’m going into a relapse. Someone says “if she can’t look after herself, maybe she shouldn’t have come out”. Someone else tells the man what’s “wrong with me” but it’s clear neither of them believe I’m really ill. I can’t speak or move, because it’s a relapse. People start to carry me somewhere, even though they’re hurting me by doing so. The police arrive when I’m too exhausted to think what happened, and people assume I provoked it, as this never happened before we had wheelchairs here.

I think the overwhelming feeling from this experience of aggression was one of being silenced. I felt somehow responsible, ashamed, as if I couldn’t speak to anyone about it. As if, somehow, by being openly disabled in public, I should be able to take the insults and aggression that come with it. That the fact that he probably meant well should make it any less hurtful. That in a nice church, this wouldn’t happen, so it’d be wrong of me to say that it had. It’s going to take a while to heal properly, and it’s going to take courage to go back to the welcome team this week.

After that, I don’t know.

This is ME – M.E. Awareness Day 2014

Eryngium Bourgatii

Most of you (my friends and family) know that I have Chronic Fatigue Syndrome (CFS). It is also known as Myalgic Encephalomyelitis (M.E) and Chronic Fatigue Immune Deficiency Syndrome (CFIDS).

As part of International ME/CFS/Fibromyalgia Awareness Day on May 12, I’m taking part in an international blog, where lots of us with M.E. answer the same basic questions. I’ve made a list of 5 things you may not know about me (in general) and 5 things you may not know about my life with CFS / ME.

Have a read and see if there’s anything you didn’t know. Awareness Day is about creating awareness, so through these questions and answers, this is my way of creating a little more awareness about CFS / ME. If you wish to pass this onto anyone, feel free to do so. It will create more awareness of this debilitating illness if you do. Thank you! :-)

I’m making the assumption that you already know the symptoms, but if not, vaguely this:

symptoms

What is your name & how long have you had ME / CFS?

Elizabeth, I’ve had ME / CFS for around two years, though it’s been noticeable to other people for about eighteen months.

Where do you live? (Country, State, City – however detailed you want)

Hampton, a leafy village on the edge of London, England.

Age (if you’re willing to share)

27

Tell us 5 things about you that the people in your life probably don’t know (non-illness-related):

  1. I play the double bass rather well. Most of my time at uni was spent lugging Guiseppe, my gorgeous French walnut double bass, around to orchestral rehearsals. I’ve played in tiny churches and massive concert halls. I’ve even played on the back of a truck. My favourite things are symphonies by Brahms, Bruckner, Sibelius and Shostakovich. Sibelius 5 is my all-time favourite piece of music, one year at the Proms I listened to the whole thing standing on tiptoes to see more.
  2. I could somersault and used to trampoline regularly. I’ve worn sparkly leotards and have a selection of interesting socks.
  3. My favourite TV programme is Holby City. Not because of its quality, per se, but because of its reliability. From 2004-2011 I moved house 18 times (I think), and in every new home, on Tuesdays it was reliably there, when nothing else felt like home. On Wednesdays, as an intern, I had 90 minutes off in the middle of the day to make up for late-night Alpha courses, and I’d use 60 of them catching up with Holby. Doctors going out with nurses, people being saved from the brink of heart failure, and the odd train wreck at the end of the series to kill off the expensive actress who’s going to ITV. What’s not to love!?
  4. I live with a semi-retired couple, in a house full of old-people stuff. We’ve got six remote controls, mismatched crockery, a selection of wicker conservatory furniture and you have to put a mat under anything that’s going on the table. Not cool. But I love it. Think of having an extra set of parents, but who aren’t uniquely annoying to you because they remind you of that time you dropped the marmalade when you were six.
  5. I hate carnations, the bought-from-a-garage apology flower, and my favourite flower is eryngium bourgatii (sea holly). It’s just so spiky and blue! I used to design gardens for a living, so I know Latin names but not common ones for a lot of plants. I have feelings about all of them, not all positive.

Tell us 5 things about you that the people in your life probably don’t know about your life with CFS / ME:

  1. I spend at least a day a week (usually two) completely housebound. Most of that time is spent in bed, with normally two bathroom trips and two trips downstairs (one to fetch breakfast and lunch, one for dinner).
  2. The most obviously disabled part of my day is the train journey home, where as the adrenalin of the day wears off, my legs, back and hands go into random, painful spasms. Everyone else in the carriage looks at me like a weirdo, and judges the bloke who was reluctant to give up the priority seat.
  3. I can actually run still. Although I use crutches on a day-to-day basis, running is technically a possibility. However, it’s excruciatingly painful, I can do about 40m before my legs give way, and my chest will hurt as if I’m under an elephant for about 15 minutes afterwards. Then I regret it all day, and the next day too, and have worse joint pain for a week. I just miss it so much that occasionally it’s worth the fall-out. When I started using crutches, a colleague tried to buy me an inflatable parrot, to complete the pirate look.
  4. I have a bus pass, like a pensioner, but unlike a pensioner it’s subject to a mobility assessment. Since getting ill, the best part of my commute, the 15 minutes walk over Vauxhall Bridge, is completely impossible for me if I want to save enough energy for working. So I’m almost always getting buses for one or two stops, because the walk is too much and the tube has staircases. Staircases are my nemesis, I’ll basically a first generation Dalek. A colleague once called me Davros.
  5. Energy is energy is energy. Physical, emotional and mental tasks all draw power from the same battery, which doesn’t recharge reliably. So if a conversation is tending towards the deep-and-meaningful, I’ll sometimes have to ask my friend or family member to put it on hold until I’ve got home safely, rather than risk wasting too much “moving about energy” on feeling things and getting stuck far from home. When I’m really really exhausted and can barely move, but for some reason I’m not at home in bed, there are a few friends I’ll trust to just make all emotional and mental decisions for me while I “power down”.

What one thing do you think most people wouldn’t know about living with ME / CFS that you’d like them to know?

When you see me in person, that time is so unbelievably precious to me, that I want you to value it too. This illness really hurts. Really really hurts. All the time, and every day. Very considerately, people ask if I’m feeling better, when they’d seen me taking pills or I’d cancelled our last shared activity due to illness. And I just want to slap them, if it wouldn’t hurt my hand so much. No, I’m not feeling better, I’m never feeling better, and you looking disappointed isn’t going to do anything to change the situation. You only see me today because yesterday and tomorrow I didn’t and won’t see anybody, just to save up the strength to come and see you. And seeing as I have, why are you asking me to tell you about pain, and pills, and to give more precious time to the disease? Why aren’t we living? Why aren’t we holding onto each other’s every word like it’s the last thing we’ll say to anybody in days? Why are we so unnecessarily mean?

What is the most frustrating aspect for you of living with ME / CFS?

Having to act like a weirdo. I become that person who’s in the way on public transport, who stops irrationally in the street, or who sits down when everyone else is standing up. I’m the person who used to irritate me when I was sprinting to change tube, who’d mess up my lovely neat church services by needing things in large print or wanting the handrail putting out. And I see people like me-five-years-ago getting annoyed and it shows up how driven and self-important and inflexible I was when I was younger. Ouch.

Anything else you’d like to say before finishing?

What you can do to help is make sure that anywhere you go out to is accessible to me. For example, check that your local pub has an accessible loo, and if it does, it isn’t rendered inaccessible by being full of 12 bags of rubbish, a drum kit, the “celebrate Christmas with us” sign in June, or any other rubbish. A pub trip where you can’t even drink is not worth getting out of bed for. And losing a whole crowd of regulars is worth the pub changing their storage habits for. Don’t sit in priority seats if you don’t need them. Don’t use lifts you don’t need, but do complain if they aren’t working. It takes time, but if each able-bodied person made even one “your access isn’t accessible” complaint each year, or did something to initiate change, then those of us without much energy could use it doing things and going places, rather than fighting to be allowed in.

Examples of “accessibility” have included “due to flooding, the train you’re on will be met by a replacement bus service at a non-accessible station. Please crawl upstairs in the rain.” Luckily I spotted the problem at an earlier station, but the complaint letter took 4 months to get a barely-comprehensible and indifferent reply. If everyone on the train had objected, they’d have noticed and changed something.

Oh, and send cake. Cake makes it all better. And kittens. And give me hugs if you see me, but not overenthusiastic ones, as I’m a bit fragile.

Contact details (if you want to give them) – blog, Twitter, FB etc

This is my blog – https://montaguemouse.wordpress.com/

Twitter is @eah39. Twitter is the easiest way to contact me, because it requires very little energy to reply. I’m happy to answer any questions, but might be slow as it takes days to save up enough spare time for them.

I am no longer

I am no longer “confident”. You may not mock me, I will cry. Mock everyone else, but not me. I should be singled out as the one who can’t take it. Banter is for the able-bodied.

I am no longer “attractive”. An impenetrable force-field extends around me as I pick up my crutches. “But you don’t look ill” is the only permitted compliment.

I am no longer “multi-dimensional”. Every emotion I have is tied up in my illness, and it is always the same. So reiterate that I must “feel poleaxed all the time” and save questions about how work is going for your other colleagues.

I am no longer “purposed”. What I want for my future is to lie in bed taking pills and still feeling pain. So let’s talk about that for as long as possible.

I am no longer “stylish”. As you have the power over my choice of this-or-nothing, choose that I should wear beige, drink from a kids’ tumbler in a bar, use a toilet surrounded by your stored recycling bags and have Comic Sans on my giant keyboard.

I am no longer “individual”. I am a generic disabled person whose access needs have been met. They match those of a blind person, and someone who uses a wheelchair. Repeat this belief to me, because, like all the rest of ‘us’, when I ask for change I am secretly building a discrimination case.

I am no longer a confident, attractive, multi-dimensional, purposed individual. Thank you for reminding me every day. I am no longer me.