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.

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On charities and knitting

I feel like it’s all our fault. Mine is one of the charities that actually do knitting. We’re giving you all a bad name.

I first met community-based knitting as a charity-run activity during the Olympics, when I spent quite a few afternoons with a church in Hackney. In their estate there’s a public square, with benches, flowerbeds etc, and rows of shops around the outside. It was here that they started. Just low-key at first, providing some wool and knitting needles, with a handful of residents who could knit to start people off. Small groups would gather, knit, chat, enjoy the sunshine. But in this context, it worked.

  • Knitting sessions gave the adults (and sometimes the kids) in the community an excuse to sit out on the square in the summer. Reclaim territory, keep an eye on their kids. You can’t sit on a bench alone in public, that’s just odd. But while knitting… well, that’s completely normal.
  • It gave older people a context to teach and to be valued for their skills. In a place where retired women are often vulnerable, seeing younger adults learn from and listen to their elders was beautiful.
  • It reestablished a sense of family. For many on the estate, London isn’t where they grew up, and they’ve lost many extended family in moving. The grandmother who reassures you as a new mum, the uncle who can lend a hand with DIY, all of that is lost when families are upended and have little choice of where housing is provided for them. An activity that helps communities get to know each other and build trust is essential.
  • It taught a new skill. Needlecraft fell off the school syllabus decades ago, so to teach my generation and younger how to care for their clothes opened up choices to them that this throwaway-fashion culture doesn’t afford.
  • It introduced a communal but also individual activity. It’s so easy to spend your free time attached to screens, ignoring those around you. A calming, creative hobby where the mind is engaged does wonders for your mental health.

So yes, we will go back to our knitting. Until our communal spaces are safe, our elders are valued, our families are supported, people have warm clothes and good mental health, we’ll continue. But if you think for a minute that any of those issues aren’t political – policing, welfare, housing, health provision or basic human dignity – then you best think again.

Learning to love again

You’ve probably heard of the five love languages. But what happens when you lose your ability to use the language that comes most naturally and need to communicate using other ways?

The theory goes that there are five ways by which we might show or feel affection; physical touch, presents and gifts, words of affirmation, quality time and acts of service. Most people will have one primary language that resonates with them, and the language by which you feel loved isn’t necessarily the same as the one by which you show people you care about them.

For me, I’ve primarily shown people that they matter by spending quality time with them. I’m the one in our family who initiates the phonecalls, for example. My secondary language, and the one I’d tend to show in less familial settings, is acts of service. So it’d be very natural for me to respond to a colleague under pressure by making them tea or getting the printer working for them, rather than encouraging them to keep going. But these methods doesn’t always work.

Not quality time

Recently I’d been looking forward to a houseparty because it afforded the opportunity of spending quality time with one of my friends. She lives hours away and we rarely see each other, but when we do it’s brilliant. We both arrived about 2pm, and she had until 5pm before she needed to find a train home. So far, so good. But as I arrived, I felt very sick, and spent the next 90 minutes or so vomiting violently and feeling very dizzy and faint. By the time I surfaced into the party, I was pale and shaking, my time didn’t have much quality to it! We chatted while I worked myself up to some dry toast, but the opportunity to reconnect was lost.

Giving gifts doesn’t come naturally to me at all; I find it awkward and uncomfortable. (I’ve previously bought gifts for people, only to bottle out from handing them over.) But I remembered that my friend had mentioned at the party that she was getting a new bike, to replace the one that was crushed in her horrific road accident. So I decided to send her a bicycle bell in the post, painted with her name, to show my support for her getting back on the roads after her injuries. To me it didn’t feel the same as the quality time we’d lost, but I think it made her happy.

Not acts of service

This one’s obvious – I have very little physical energy. To spend that energy on serving someone else would probably mean I couldn’t safely get myself home, or chew and digest my food. So as much as I wanted to care for my friends while camping by sorting out their tents, making them food, or washing up, it would just have been foolish. Clumsily, I started trying to use words of affirmation to build them up, complimenting the way they did things. But I’m naturally quite cynical, and find it hard to say nice things without wondering if I sound disingenuous!

Conversely, I’ve never felt particularly loved when people do things for me, despite how often they do. I’d much rather have a hug or a present. So I can easily and almost physically remember from my holiday the two times somebody hugged me that weren’t just to say goodbye, the hands that helped me up, and the four times somebody brought me something (hot chocolate, wellies, lunch, hot chocolate again). The value of these gifts needn’t be significant (80p, £10 which I reimbursed, free, 80p again) and it doesn’t matter if I asked for them first. Maybe it’s a second child thing, but when somebody brings me something they’ve got just for me, I’m overwhelmed.

Which languages are being spoken to you?

You can’t always choose how people care for you. Now I have physical and obvious care needs, lots of people do small acts of service for me. But I’m rarely hugged – crutches or my wheelchair kind of get in the way. I spend most of my time alone, resting, so quality time with others is hard to come by – I lack the stamina for it. Twitter is odd, in that all of those friendships are built solely on words of affirmation, as no other language is possible. But it’s still a place of real friendship.

In the last few weeks, I’ve tried to be more conscious of the ways in which I am loved, to be thankful for them, and for my friends and family. I’ve tried to show friends I care by being generous with gifts and praise, rather than giving up because I can’t find the words in my native love language. This loss of eloquence is a side of my illness that I never realised would be so disabling.

How has it been for you? If you’ve acquired a disability, has that changed the ways you’re able to care for people? Or if you don’t have one, in what environments are you more or less comfortable in expressing affection for your friends and family?