The Hidden Village of Aspergers

April 4, 2016

It’s me again, in-sig-ni-fi-cant me again; also, Autism Speaks can fuck right off

I’ve not updated this blog in over a year. Basically, a lot of stuff has happened.

– I changed jobs in January last year and now work in a hospital. It’s better than the last place, thank G-d. I’ve also started doing freelance translation work on the side.

– I sang The Ballad Of Tom Jones onstage with Space at the Liverpool International Music Festival in summer. It was one of my proudest achievements and I can’t thank them enough for letting me do it, it was an honour. I got to do it again in Runcorn, where I was dressed up as Anne Shirley (I pretended Tommy was Gilbert Blythe).

– My brother was diagnosed with Hodgkin’s lymphoma in summer, and has been in and out of hospital having chemotherapy. Thankfully, he is fine now and will be coming to Primavera this year.

– My mum was admitted to hospital in January this year after drinking too much and passing out due to dehydration and lack of food. She’s OK now, but it was…not pleasant.

– I have been having some very disturbing intrusive thoughts about Roberto Martinez, Everton’s manager, which I will detail another time. I’m getting help for it.

On another note, it’s April, it’s Autism Awareness Month, and this means the dreaded blue jigsaw piece and the ‘turn it blue’ meme are going to rear their ugly heads. I’m talking, of course, about the notorious Autism Speaks, the group with THAT ad about autism. Well, they don’t bloody speak for me, or any of the autistic people I know. Autistic Hoya and The Caffeinated Autistic both explain much better than I could why Autism Speaks are bad, bad people, and not an organisation you should be supporting. Be warned: some of the content is very distressing.

May 23, 2014

Quiet Beach

On some quiet beach, we sang songs for the sea
On some quiet beach, lost with the waves we breathe

TW: attempted suicide

It’s taken me ages to gear up to writing this, because it’s not going to be easy to write. I was motivated to write this post today for two reasons. One, a guy I follow on Twitter posted about suicide and selfishness, and it got me thinking. Two, Midland Railway, a band I used to play in, have got back together and are playing in the Retro Bar tonight, and the last time I played with them, I ended up trying to kill myself.

I have three suicide attempts under my belt. None of them have been serious enough to warrant extended hospital stays, though I did have counselling. The first time, I tried to hang myself, but something made me grab hold of the noose. I managed to pull myself back from the brink. I can’t remember what started it.

The second time, I was in my second year of university. It was a tough time. I was bogged down with coursework, my housemates and I were not getting on, I was juggling my degree with student council and other commitments, I was in love with a man who didn’t love me back, and to top it off, my gran had died. Everything came to a head when I found a note on the fridge – my housemates often communicated by leaving notes – about putting single items in the washing machine. It was clearly aimed at me as I’d washed a towel. I slashed my arm. Later, I was in the union and two of my housemates blanked me, and I was pretty wound up. I went to Hulme Hall for practice with another band I was in, but no-one showed up. I sat around crying for a bit, then went the chemist, got some Nurofen and was in the process of wolfing it down when a housemate found me. She made me throw up the pills and called an ambulance. I spent a few hours in hospital, but luckily I was OK and I was discharged. As I walked home, all I could think of was the final line of the poem Mum read at Gran’s funeral: ‘I am not there, I did not die.’

When I got home, the door was locked. I rang the doorbell. One of my housemates answered, gave me a dirty look and walked upstairs without a word. The housemate who found me must have told her that she was partly to blame for my overdose. We later got into an argument and I thought that had cleared the air but things were never the same after – they didn’t buy me anything for my birthday, even though we’d all celebrated theirs, and they’d walk out of a room when I went in. I dropped out of uni and decided to repeat the year. On the advice of a counsellor, I moved out of the house and spent the rest of the year in Richmond Park, before going back to my parents’ house in Chester. Before I left the house, I left a note explaining what I’d done. My housemates never spoke to me again.

Two years later, I was playing at Joshua Brooks with Midland Railway and got into a heated argument with the drummer over some sticks I thought I’d lost, culminating in me threatening to smash him over the head with my guitar, and frantically rummaging around on the floor looking for the sticks, screaming my head off. As soon as I got home, I ate all the pills in the house I could find, and posted a goodbye message on my Livejournal. Sarah, the other female band member and a good friend of mine, came over and kept me company until the ambulance arrived, and my then boyfriend also came and sat with me in the hospital. I was kept in overnight on a drip to get the crap out of my body. Later, the male members of the band kicked me out behind my back (Sarah was kept out of the loop). I only found out because my then boyfriend told me. I don’t want to go over old ground too much, but suffice to say, whenever I hear about Midland Railway now and see them on my feed, I feel sick and shaky. I’m back in the hospital again.

When I told my mum about my first overdose, her legs went. My maternal grandad was mentally ill and had attempted suicide several times. I remember one time when I got a frantic call from the counsellor’s office telling me to ring Mum. I’d made some comment about slashing my wrists the previous night, and she was frightened and had called the counsellor’s office. I rang her to tell her I was OK and she started crying, and I hated myself so much for what I was doing to her. The thing is, as I’ve said before, however much you may love your family and friends, when you’re suicidal, they do not figure. There is no room in your head. All you can think about is disappearing. You cannot go on anymore; you just want to wipe yourself out and cease to exist, and never mind who will have to pick your body off the floor or out of the bath, clean up the blood, make the phone calls. Your entire world is that little box of pills in your hand and you think of your gran and your dad and how you want to be with them. No more pain. No more sadness.

What does this have to do with Aspergers? I think it comes back to emotional difficulties – emotional and sensory overload, not knowing how to cope, and it all comes to a head and when you tend to see things in black and white, you think of extreme options. So many times I’ve had a bad day at work and thought, “I can end this. There’s one way out.” I think of pills, of ropes, of bleach. I had such a moment lately – luckily, Mum and Jack were able to calm me down over the phone.

I’ll be honest. The main reason why I’m not dead is because I love Mum and Jack and I can’t bear to think of what me dying would do to them. Obviously, there are other people in my life who I care about – my stepfamily, my other relatives, my friends – but I know how much my suicide attempts hurt them. Jack even argued with Mum that I wasn’t safe to go back to uni. One good thing that did come out of it, though, was Jack sending me a text telling me that he loved me and he just wanted me to be OK. Nothing brings my family together like a crisis. I’ll elaborate more on this in Guestlist To Hell, the final post of the series.

May 1, 2014

Crying On The Webcam

One more minute watching you, and I feel the same
One more minute hearing you, and I feel your pain, pain, pain
She’s crying on the webcam, I want to kiss her now
She’s crying on the webcam, she’s feeling full of doubt
She’s crying on the webcam, I’d like to help her out

TW: self-injury, eating disorders

It’s Blogging Against Disablism Day, and I’ve decided to swap the Space posts around a bit and do a post about self-harming. Partly because of the stigma surrounding cutters, and partly because I was hauled into the partner’s office at work after he’d had a conversation with my boss about the fact I’d cut myself recently, and I came out feeling drained and miserable and feeling that I’d been treated like a criminal. I’m not kidding – another solicitor was in there taking notes, which I didn’t twig until I was asked to spell ‘Venlafaxine’, and I was asked the sort of questions the police ask our clients at the police station. It was not a pleasant experience and it made me realise how some people just do not get it.

As I’m tired and my left arm hurts (due to grating chocolate for a meal I made last night), it’s going to be one of those posts with bullet points.

The basics:

– I started cutting myself when I was 14, in 1999. It was after an argument I’d had with my mum.

– I generally cut my arms, but have also cut my legs, stomach, breasts and face.

– I have used knives, razor blades, broken glass, broken porcelain, compasses and scissors. I have never burned fags out on myself, but I have poured boiling water over my arm a couple of times, or bashed myself with a heavy folder, a hammer or a poker.

– I have scars on my arms, but most are only visible in summer.

– I would say that I am an addict.

I do not self-harm because:

– I am a Manics fan and I want to copy Richey Edwards. I was heavily into the Manics at the time I started self-harming, and certain songs of theirs did resonate, but it wasn’t a copycat thing. By that logic, I’d also be an alcoholic since I like the Pogues.

– I want attention. When I wrote an article for the Manchester University student paper about self-harming, I said – and I stand by this – that there are far more dignified and painless ways of getting attention. Such as dancing naked on a table in Jilly’s Rockworld (RIP). I’ve been accused of doing it for attention because I’ve gone around wearing t-shirts or sleeveless tops or dresses after cutting. It genuinely does not register with me that people will react, and if the alternative is being boiling hot and/or uncomfortable, I’m willing to risk showing my arms off. I am not like Maeve, the girl in the song and the accompany video, who filmed herself holding up various cards with little snippets of info about her life (she’s also a recovering bulimic, incidentally).

– I am trying to manipulate people. I have threatened to cut – I’m not proud of this – but never once have I done it with the specific aim of hurting someone else. I know how much it hurts my family when I self-harm, but I’ve never, to the best of my recollection, held it over them.

– I want to be cool and/or am following a trend. I do have a few mates who self-harm, but I did it way before I met any of them, and when have I ever followed trends? I am the least trendy person I know.

– I have a pain fetish. There is nothing sexual about it.

I do self-harm because:

– I struggle to deal with strong emotions (see Mister Psycho). It is a release. A temporary one, sure, but it’s still a release.

– I have very little self-confidence and I fucking hate myself. I despise myself. I’m not fishing for compliments; I genuinely do feel, especially on a bad day, that I am a loathsome human being, and even when my friends and family tell me that I’m not a loathsome human being, that nasty little voice still doesn’t shut up, and it tells me I deserve to be punished. You ate too much? Stick your fingers down your throat. You were mean to someone, you’re fat, you didn’t do the task you were supposed to, your father would be disappointed, you weren’t there for your mother when she had a drink problem, you had an argument with your mother, you didn’t give that homeless person change…you know what to do.

– I turn my anger inwards. I had to laugh when I nearly self-harmed at work and a colleague was apparently concerned I was going to shank her. I’m more likely to hurt myself than anyone else.

– It leaves visible marks on my skin, like a brand or a scarlet letter or a sign worn round my neck (hence why I don’t take up boxercise or martial arts as a release). It is the mark of punishment.

Things people have said to me about self-harming: 

– “It tears me apart when you cut yourself” – my brother.

– “How could you do that to your lovely face?” – my mum.

– “When you cut your arms, people are going to react, that’s the reality of the situation” – a guy I was obsessed with at uni.

– “Thank you so much for writing that article” – a friend who will remain nameless, and who I met at a gig after she got chatting to me about the article, amongst others.

– “When did you do it? How long ago did you last cut yourself? How many weeks? How many months? Are you getting help? Are you seeing anyone? Are you going to stop?” and so on – my colleagues, during the interview.

– “What happened to your arm?” – a supermarket cashier.

– “Your arms are going to look like a fucking zebra” – a woman I knew at uni.

Other points I would like to make:

– Telling me to stop cutting and assuming I’ll instantly stop DOES NOT WORK. Addiction doesn’t work that way. My mum accepted long ago that I can’t promise her that I’ll stop for good – I’ve tried, I’ve promised, but I always broke the promise. If she can’t talk me into stopping, no-one else can, especially people I don’t particularly know or like.

– Telling me to rid my house of plasters, antiseptic and so on is a terrible idea. The idea behind it is that without stuff to put on my wounds, I’ll be less inclined to cut. This is bullshit. I’ve self-harmed even when I’ve had no plasters or antiseptic available, just bog roll or kitchen towels, and it’s far better for me to have a medical kit of sorts handy.

– Anything can trigger me into cutting. Things that have set me off have included arguing with my family, stress at work, Everton losing 4-0 to Liverpool (I was frightened I’d have to deal with loads of abuse from Liverpool fans I know on my Facebook and Twitter feeds), falling out with people, finding a note stuck to the fridge that was clearly aimed at me (which I will discuss in Quiet Beach, because that was the start of a very bad day), certain articles on the internet, homeless guys asking me for money…the list is endless.

– I can understand if my scars catch your eye, but please don’t have a go at me for doing it or give me the third degree. I have my reasons for doing it and like I said, I am the only person who gets physically hurt.

– Do not assume cutters are all hormonal teenage girls. Men self-harm. Non-binary people self-harm. Adults self-harm. There are people old enough to be my parents who self-harm.

– If we want to talk about it, we’ll talk, but don’t force the issue.

March 26, 2014

This isn’t part of the Space miniblogs, but it is important.

A mate of mine linked to this article on Facebook, titled ‘Intersectional Collisions: “But What If He’s Autistic?”‘. It’s on Feminist Hivemind, and it’s well worth a read. This is exactly the reason why I started this blog; because of the continued misconception that autism / Aspergers are ‘male’ conditions. People might ask if the guy harassing women is autistic (and therefore, he can’t help his shitty behaviour), but do they ask if the women being harassed might be on the spectrum? Do they balls.

Firstly, it’s bloody demeaning to men on the autistic spectrum. For every Chris-Chan, there are plenty of decent men who, while maybe being a bit socially awkward, have boundaries and respect them, and don’t use their disability as an excuse to creep on women.

Secondly, what about us? What about the women on the receiving end? What about autistic women being harassed by neurotypical men? I wrote a bit about this myself in the Bastard Me Bastard You post. We aren’t always given the tools to deal with harassment. Should we laugh it off? Ignore it? Respond? I’ve seen the ‘he might be autistic’ excuse used enough times, and it absolutely does my head in.

Anyway, go read.

March 2, 2014

Day of Mourning – Remembering People with Disabilities Murdered by Caregivers

This isn’t part of the Space miniblogs, but I’m going to post it anyway because it’s important. I just wish I’d known about it last night.

A virtual vigil has been organised for people with disabilities who were murdered by their caregivers. Links to texts being read during the vigil are here. As a disabled person living in a country where the disabled are victimised by the press and the government, I am so, so glad this is being done.

Just recently, Sheila Holt was deemed fit for work despite being in a coma.

Mark Wood, a man with Aspergers Syndrome and OCD, starved to death after having his benefits cut off.

Lewis Gill was sentenced to a frankly ridiculous four and a half years’ imprisonment for punching Andrew Young, another man with Aspergers Syndrome, to death in the street.

The people who victimised these three people were strangers.

Imagine how it must feel when a family member, someone who is supposed to love you and care for you, turns on you, and you cannot speak out, or you cannot fight back.

I am fortunate in that, besides being on the milder end of the spectrum, I have a loving and supportive family. However, these people were not so lucky. The murderers – let’s not mince our words here – get plenty of sympathy, but what about the victims? Who will speak out for them?

Here are the names of just some of the many, many people with disabilities who died at the hands of their carers, and be warned – it is very upsetting. The list of names in poster form is here.

Zichronam le’vracha. May their memories ever be a blessing.

  • Tracy Latimer, 12 years old, gassed by her father in 1993

  • Charles-Antoine Blais,  6 years old, drowned by his mother in November 1996

  • Casey Albury, 17 years old, strangled by her mother in 1997

  • Pierre Pasquiou, 10 years old, pushed into the sea by his mother in 1998

  • Jim Helm, 27 years old, killed by his mother in a murder-suicide in November 1998

  • Daniel Leubner, 13 years old, burned alive by his mother in September 1999

  • James Joseph Cummings Jr, 46 years old, stabbed to death by his father in the institution where he lived in November 1999

  • Justin Malphus, 5 years old, beaten and drowned by his mother in April 2000

  • Gabriel Britt,  6 years old, suffocated by his father in March 2001

  • Johnny Churchi, 13 years old, strangled by his mother in 2001

  • Mark Owen Young, 11 years old, poisoned and then pushed off a bridge by his mother in a murder-suicide, September 2001

  • Brahim Dukes, 18 years old, starved by his stepmother in December 2001

  • Lilian Leilani Gill, 4 years old, strangled by her adoptive mother in March 2002

  • Mitchell Dickson, 10 years old, slashed to death by his mother in June 2002

  • Dale Bartolome, 27 years old, killed by his father in a murder-suicide in July 2002

  • Jason Dawes, 10 years old, suffocated by his mother in August 2003

  • Maggie Caraballo, 38 years old, beaten to death by her sister in August 2003

  • Angelica Auriemma, 20 years old, drowned by her mother who first tried to electrocute her to death in 2003

  • Scott Olsen, 29 years old, starved to death by his sister in December 2003

  • Eric Bland, 38 years old, starved to death by his sister in March 2004

  • Scarlett Chen, 4 years old, drowned by her mother in July 2004

  • Patrick Markcrow, 36 years old, drugged and suffocated by his mother in March 2005

  • Tiffany Pinckney, 23 years old, locked in a basement and starved to death by her sister and brother-in-law in April 2005

  • Sarah Naylor, 27 years old, shot by her mother in a murder-suicide in September 2005

  • Ryan Davies, 12 years old, drowned after his mother caused him to fall off of a bridge in a murder-suicide

  • Christopher DeGroot, 19 years old, died of severe burns after he was locked in his parents’ apartment alone during a fire in May 2006

  • Katie McCarron, 3 years old, suffocated by her mother in May 2006

  • William Lash III, 12 years old, shot by his father in a murder-suicide in July 2006

  • Lakesha Victor, 10 years old, starved by her mother in August 2006

  • Marcus Fiesel, 4 years old, wrapped in heavy blankets by his foster parents and left in a closet to suffocate while they went out of town in August 2006

  • Ulysses Stable, 12 years old, throat slit by his father in November 2006

  • Brandon Williams, 5 years old, poisoned and beaten to death by his mother in March 2007

  • Criste Reimer, 47 years old, thrown from a balcony by her husband in 2007

  • Jared Greenwood, 26 years old, died of infected bed sores after being left in place and neglected by his mother in 2007

  • Francecca Hardwick, 18 years old, locked in a burning car with her mother in a murder-suicide in October 2007

  • Naomi Hill, 4 years old, drowned by her mother in November 2007

  • Shellay Ward, 7 years old, starved and neglected by her parents in November 2007

  • Maxwell Eyer, 2 years old, beaten to death by his father in December 2007

  • Xiao Fei, 20 years old, poisoned and suffocated by her mother in 2008

  • Calista Springer, 16 years old, chained to a bed and abandoned in a fire by her entire family in 2008

  • Courtney Wise, 17 years old, starved to death by her mother in February 2008

  • Ethan Scott Kirby, 3 years old, beaten to death by his mother’s boyfriend in August 2008

  • Jacob Grabe, 13 years old, shot by his father in 2008

  • Tom Inglis, 22 years old, died after his mother administered an overdose of heroin to him in November 2008

  • Christian Clay Jenkins, 14 years old, given an overdose of oxycodone by his father in 2008

  • Kyle Dutter, 12 years old, shot by his father in a murder-suicide in 2008

  • Lexie Agyepong-Glover, 13 years old, left in a frigid creek by her mother and died of drowning and exposure in 2009

  • Terrell Stepney, 19 years old, poisoned by his grandmother in a murder-suicide in 2009

  • Jeremy Fraser, 9 years old, died of recurrent leukemia after his mother withheld the medication that would have saved his life in March 2009

  • Shylea Myza Thomas, 9 years old, starved to death by her aunt, who then hid her body in order to continue to collect money she received for Shylea’s care in April 2009

  • Pamela Camille Hall, 59 years old, stabbed by her son-in-law in April 2009

  • Lloyd Yarbrough, 62 years old, fed an overdose of prescription medication through his feeding tube by his wife in May 2009

  • Jeremy Bostick, 11 years old, gassed by his father in 2009

  • Peter Eitzen, 16, stabbed by his mother in July 2009

  • Tony Khor, 15 years old, strangled by his mother in October 2009

  • Betty Anne Gagnon, 48 years old, tortured to death by her sister and brother-in-law in November 2009

  • Walter Knox Hildebrand Jr, 20 years old, died of a seizure induced by his brother’s physical abuse in November 2009

  • Laura Cummings, 23 years old, raped and tortured to death by her mother and brother in January 2010

  • Jude Mirra, 8 years old, forced by his mother to overdose on prescription medications in February 2010

  • Ajit Singh, 12 years old, forced by his mother to drink bleach in February 2010

  • Gerren Isgrigg, 6 years old, died of exposure after his grandmother abandoned him in a remote area in April 2010

  • Leosha Barnett, 17 years old, starved to death by her mother and sister in May 2010

  • Glen Freaney, 11 years old, strangled by his mother in May 2010

  • Payton Ettinger, 4 years old, starved by his mother in May 2010

  • Christopher Melton, 18, gassed by his mother in a murder-suicide in June 2010

  • Rylan Rochester, 6 months old, suffocated by his mother in June 2010 because she believed him to be autistic

  • Kenneth Holmes, 12 years old, shot by his mother in a murder-suicide in July 2010

  • Zain Akhter, 5 years old, and Faryaal Akhter, 2 years old, strangled by their mother after she first tried to get them to drink bathroom cleaner in July 2010

  • Emily Belle Molin, 85 years old, hit and run over with a car by her son in August 2010

  • Rohit Singh, 7 years old, beaten to death by his father in September 2010

  • Zahra Baker, 10 years old, murdered and dismembered by her stepmother and perhaps her father in October 2010

  • Chase Ogden, 13 years old, shot by his mother in a murder-suicide in October 2010

  • Karandeep Arora, 18 years old, suffocated by his parents in October 2010

  • Donald Parojinog, 83 years old, starved by his daughter in January 2011

  • Chad Jackson, 25 years old, starved and neglected by his mother in July 2011

  • Julie Cirella, 8 years old, poisoned by her mother in July 2011

  • Joseph Conant, 11 years old, and Nacuma Conant, 33 years old, shot by their father/brother in July 2011

  • Noe Medina Jr, 7 months old, thrown 4 stories by his mother in August 2011

  • Benjamin Barnhard, 13 year old, shot by his mother in a murder-suicide in August 2011

  • Jori Lirette, 7 years old, decapitated by his father in August 2011

  • George Hodgins, 22 years old, shot by his mother in a murder-suicide in March 2012

  • Daniel Corby, 4 years old, drowned by his mother in March 2012

  • Malea Blakely-Berry, 16 years old, starved by her mother in June 2012

  • Matthew Graville, 27 years old, tortured and beaten to death by his half-brother in July 2012

  • Melissa Stoddard, 11 years old, suffocated in restraints that her father and step-mother routinely used in December 2012

  • Robert Gensiak, 32 years old, starved by his mother and sisters in March 2013

  • Alex Spourdalakis, 14 years old, poisoned and stabbed by his mother and godmother in June 2013

  • Matthew Hafer, 28 years old, poisoned by his mother in July 2013

  • Marian Roberts, 57 years old, shot by her father in a murder-suicide in August 2013

  • Jaelen Edge, 13 years old, poisoned by his mother along with his sister Faith in September 2013

  • Tamiyah Audain, 12 years old, starved, abused and neglected by her cousin in September 2013

  • Dameian “Luke” Gulley, 14 years old, strangled by his stepfather in November 2013

  • Randle Barrow, 8 years old, drowned by his mother in a murder-suicide in December 2013

  • Mickey Liposchok, 52 years old, shot by his father in a murder-suicide in December 2013

  • Damien Veraghen, 9 years old, poisoned and suffocated by his mother in a murder-suicide in January 2014

  • Vincent Phan, 24 years old, shot by his mother in a murder-suicide in January 2014

February 23, 2014

An announcement

If you’ve been following this blog, you might have noticed that I am a big fan of the Liverpool indie/rock / uncategorisable band Space. I’ve written about hanging out backstage with them at a gig in Manchester in March last year, how frontman Tommy Scott looked after me when I had a serious panic attack at another gig in Birmingham, and how they got me through high school. As it happens, they’re releasing their fifth album, Attack Of The Mutant 50ft Kebab (yes, really), next month. It looks to be the best thing they’ve done since Tin Planet in 1998. To commemorate this, and as a challenge, I’m doing a series of miniblogs about Asperger’s Syndrome – some personal, some advice. Each will be around 600 to 800 words. Moreover, each post is going to be named after a Space song and have a different theme. Here’s the list:

1. If It’s Real: yes, it is a disability
2. Neighbourhood: moving house
3. Mr Psycho: emotional difficulties
4. Female Of The Species: not fitting in with other girls
5. No One Understands: the diagnosis
6. Dark Clouds: memories of Barcelona
7. Blow Your Cover: first sexual relationship
8. Influenza: getting ME
9. Life Of A Miser: managing money and other household things
10. Avenging Angels: relationship with my father
11. The Man: coping at work
12. Disco Dolly: festival tips
13. Fran In Japan: role models outside the family
14. I Am Unlike A Lifeform You’ve Ever Met: on books and the imaginary world
15. Bastard Me Bastard You: unwanted attention from men
16. Numb The Doubt: on drugs
17. Everybody In The Madhouse: primary school
18. Diary Of A Wimp: obsessive behaviour
19. Gravity: Dad’s death
20. Juno 54: relationship with music
21. Hell Of A Girl: bisexuality
22. Suburban Rock ‘n’ Roll: the Chester years
23. The English Language Let Me Down: speech and language
24. Paranoid 6teen: relationship with my brother
25. Crying On The Webcam: self-injury and stigma
26. Quiet Beach: the overdoses
27. Fortune Teller: on being childfree
28. Armageddon: on parties
29. Attack Of The Mutant 50ft Kebab: love-hate relationship with food
30. Falling In Love Again: relationship with the Perrys (my current stepdad and his teenage kids, Alice and Tom)
31. Guestlist To Hell: the people who keep me alive

I have my friend Chloe to thank for this – I found out about NaBloPoMo through her, and I wanted to see if I could do a challenge of some kind and stick to it for a month. This year is going to be about challenges; I’m going to Barcelona again, without any family members in the background this time, I’m doing the 5:2 diet, I’m going to go and see Everton play at some point (football matches are hard to deal with), and I’m going to be doing the Race for Life in my father’s memory, along with two friends, Topher and Sarah, and their dogs, Starbuck and Semtex (and we will be walking it, as I have ME and Semtex is a bulldog, a breed not known for their athletic skills!) I also, finances depending, may go to Berlin in the autumn / winter. The horrible Schonefeld experience did not put me off, and there’s so much of the city yet to be seen.

I apologise in advance to any family members I might upset with this. Also, out of consideration to readers, I will be posting trigger warnings / content notes on posts that contain potentially triggering content (e.g. sexual assault and eating disorders).

May 1, 2013

Just because I am disabled does not entitle you to make stupid comments

As it’s Blog Against Disablism Day, I’m going to repost some comments that I originally posted on Twitter under the #heardwhilstdisabled tag. These are all things that have been said to me as a result of my having ME.

“You’re too young to be so tired” – said by countless people. Yes, I know it’s bizarre for someone in her late twenties to be tired all the time, but it does happen. There are people younger than me whose ME is so bad they can’t even feed themselves. There are people who’ve died from ME, for fuck’s sake, some of whom are around my age. It also makes me feel awkward when I see older people than me who can still make it to synagogue while I’m at home resting. It makes me feel like I’m not trying hard enough.

“I have to do all this work because you’re ill” – or words to that effect, said by one of my colleagues. So they can’t use me as cheap cover because I only work part-time? That’s not my fault. Would they rather I just worked myself into the ground and ended up having to leave? I’m not even supposed to be doing work for the Manchester office anyway. I’m not employed by them.

“I wish I could go home early like you” – said to me by the same colleague. You know what I do when I leave work? I go home – sometimes after stopping off at Sainsbury’s or my local greengrocer to buy food – have lunch, maybe go online for a bit, and then sleep for a few hours. If you want to go home early, you can take my reduced wages and my disability while you’re at it. Have fun!

“You’re having a relapse? Well, UN-relapse then” – said to me by a woman at synagogue when I explained that I didn’t know if I was going to be available that weekend because I was having a bad week healthwise. If only it were that simple. This is one of the reasons why I’m very seriously considering quitting the synagogue choir – I hate not being able to give a straight answer as to whether I’ll be able to come on Saturdays. How will I know?

“Stop yawning, it’s fucking annoying. Do some work if you’re so bored” – said to me by a colleague. I must point out that I was actually typing an attendance note at the time. I had also not had much sleep. Yawning is an involuntary thing for me, and it is not a sign of boredom, and no, you are not being funny when you ask me if you’re keeping me awake.

“You should do (insert exercise here), it’ll make you feel better / you’ll be fitter if you do more exercise” – said to me by various people. No, I do not want to go jogging / horse riding / Zumba dancing with you. I have to be careful how much exercise I do. I did pole dancing classes for a bit, but the last time I went, I had to sit down because I felt so dizzy and sick, not to mention the strain it puts on my body. I do exercise – I go to the gym, I swim sometimes – but if I do too much, it can set me back. When I went to Berlin last year, the amount of walking I did set me back for a good few days afterwards. Only I can know what’s right for my body.

These are all things that have been said to me as a result of my having Asperger’s Syndrome.

“Screaming kids make you go into sensory overload? Stop making it about you” – on a feminist blog entry about letting children into adult spaces, where some disabled people said in the comments that they couldn’t handle screaming children because it made them physically sick, something that happens to me (not to mention that screaming is a kind of trigger). Because only children have special needs, it’s not like adults have them or anything. When a kid screams its head off, it might be autistic and we shouldn’t judge, but autistic adults? Fuck off. What’s particularly irony is that these people claim to be anti-ablism. So, erm, why are you having a go at disabled people then? We exist too.

“You can’t have Asperger’s, you’re doing a languages degree” – said to me by a doctor when I was a student. Because people with Asperger’s only do maths or science, it’s not like creative or humanities types with Asperger’s exist (Gary Numan, Paddy Considine and Ladyhawke would like a word). This is one reason why I am not a fan of Rain Man, because people think we all act like that. Yes, a lot of Asperger’s types are good at maths and science, but it doesn’t mean we all are, plus I come from a family full of people who are good at history, languages and English.

“It may feel like a bereavement” – said to my mum when I was diagnosed with Asperger’s for the first time, aged ten. She did not take this comment very well.

And I’m one of the lucky ones. I’m not visibly disabled; I don’t have a cane, a dog, a wheelchair, a hearing aid or missing limbs. I’m not claiming benefits and being called a scrounger by local idiots who assume I must be on the take. I’ve never, kina hora, been beaten up for being disabled (I’ve been called names on the internet, but this is the internet we’re talking here). Other people, however, have, and the constant stigmatisation of the disabled in this country by our government and our gutter press just contributes to hate crimes against us. After all, we’re just faking it (especially if we have an invisible illness), we’re making it up for attention (especially if we have Asperger’s, BPD, bipolar disorder or any other illness du jour that naive self-diagnosing teens on the internet who’ve done a personality test think they have), we’re scroungers and I know someone who had a disability and still managed to go to work / work full-time / climb Everest / whatever. The fact that George Osborne parked his car in a disabled space sums up just what he and his government think of us, and it is not pleasant.

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