Nor well enough to blog myself this year, but the blog posts are good and always make me think, so I’m putting the link below so I remember where to go tomorrow when I’ve forgotten again 😛
I’ve mentioned before that I’m genderless (don’t identify as either male or female, and have no gender at all). There are other names for the same thing such as agender (which my brain automatically turns into agenda so I don’t use it) and non-gendered, but they all mean not having a gender at all. The genderless identity is part of a bigger category of nonbinary (the binary genders being male and female- nonbinary means any genders outside of that, which includes being both, in-between, or another gender altogether) and can also be considered to be transgender (not being cisgender, where your gender identity matches the sex you were assigned at birth). There are loads of different genders that people experience, and some of them have been well known for a long time in the communities they come from (such as two-spirit in many Native American cultures). Gender is separate from sexuality (who you’re sexually attracted to) and biological sex (what your body is). While I have no gender, I’m pansexual (attracted to people regardless of their gender- I sometimes say bisexual if not wanting to explain it as it’s close enough) and my sex is female (I have a female body with female sexual characteristics). I see myself as genderless, nonbinary, queer, and kinda trans (as I’m not transitioning from one gender to another, but I’m also not cis).
Learning that there were genders outside the binary and that being genderless was an option was a major thing for me. Since childhood I’ve felt uncomfortable being called a girl, though I tried to force myself to accept it as that’s what everyone else said I was. In my early twenties I privately experimented with being male (thinking since I wasn’t a woman maybe I was a man instead), but that didn’t feel right either. I didn’t (and still don’t) understand what it means to have a gender on anything but an intellectual level, and to me it’s something other people have and I don’t (in the same category as being able to identify people by their faces).
I’m lucky in that I don’t experience much dysphoria. Changing my first name from the longer, definitely seen as female version to the shorter version everyone already knew me by helped a lot. I like clothes that are perceived as masculine and feminine about the same, and mostly wear what’s comfortable (and probably purple and/or covered in penguins). Most of my clothes come from the “women’s” section as they fit my body shape best, and skirts/dresses are very practical with my set of disabilities. I sometimes don’t like my breasts, but I’m not sure how much of that is due to the amount they hurt me so for now am not planning on doing anything about them, and will reassess in the future when illness stuff has less priority. If I were to wake up tomorrow with a male body, after getting used to the change (change is bad) I’d probably be perfectly okay with it, which I gather is not the way most cis people feel. I do wish I were able to grow a beard, but there are cis men who can’t grow beards so it’s not a major thing. I accept that because I have a female body and don’t try to present as neither male nor female most people will perceive me as female (I do sometimes get gendered as male but that’s less common).
My preferred pronouns are singular they/them. Despite what some people think, it’s grammatically correct and has been used that way in English for hundreds of years, including by Shakespeare. Though these are my favourite pronouns, I don’t get upset if someone uses others when referring to me. I even have an order of preference, which goes:
They/them > she/her > him/his > sie/hir > any others > it/its.
I don’t like the pronoun it for myself as it feels dehumanising, but I know some other nonbinary people who prefer it and I respect their choice and try to remember to use it for them. I personally am terrible with pronouns, and often use the wrong ones for myself as well as other people due to cognitive issues (this is not uncommon in autism and for me has been made much worse due to ME). I find it especially difficult to use the less common ones such as sir/hir, xe/xem and so on. I won’t get upset if someone uses the wrong pronouns for me, I just feel happy every time someone uses the correct ones. I do try to use the correct ones for other people, and will apologise if I’m corrected. As for mine, even Johan gets them wrong sometimes 😛
Similar to pronouns, I have an order of preference when it comes to titles as well. That goes:
(No title at all) > Mx > Mrs > Ms = Mr > Miss
This probably seems like a weird order to some people, but it works with the way I think. Ideally, I try to get away without using a title at all (I’m really happy there isn’t one on my debit card). If I have to use one, then I prefer Mx, as it’s not gendered. If I can’t use that for whatever reason, I use Mrs as I’m married, am used to being seen as female and noticed that official people treated me with more respect when I started using it after getting married (they shouldn’t do, but I look very young for my age and being visibly disabled doesn’t help). Before I got married I used Ms from the age of 13, as I already didn’t like Miss, and I feel it’s just as accurate as Mr is. I’ve never really liked Miss (which is why I started using Ms as a teen) and as I’m married it’s now entirely inaccurate.
When it comes to family relationships, I mostly stick to simplicity. I like spouse and partner, but don’t mind being called Johan’s wife. Sammie calls me Mum and I see it as more as a role than anything, and it’s what’s most comfortable for her. I prefer sibling to sister, but will only correct occasionally 😛 (my siblings are trying hard to get it right.) My mum has called me her offspring which I quite like 🙂
What really makes me uncomfortable and anxious is being referred to as a lady or similar terms, especially as a group (like saying “us ladies”). I think it’s because I know it’s inaccurate, and I’ve never really felt part of a group of women. When it’s someone I feel comfortable with I might ask them not to say it regarding me, but sometimes I’m not able to.
Like many identities, coming out is a process, not a one time thing. There are some people I’ve told (such as my social worker and people online), and some I haven’t yet (like my GP because I forgot the last time I saw her). I have to weigh up each time whether it’s worth the hassle to explain what being genderless means, and there’s the risk they will think it doesn’t exist or I’m making it up to be a “special snowflake”. I told the care home last time I was in because it would have some impact on my care (specifically being referred to as a lady or similar causing anxiety that I can’t hide while staying there) and other than the extra paperwork they weren’t expecting (as though I’d told my social worker it was the day before so after he’d last contacted them) it went really well. I also have to deal with the fact the vast majority of organisations just aren’t set up for anything other than the binary. Ideally I’d like to have identity documents such as a passport that reflect that I’m neither male nor female (other countries use an X marker for this, in place of M or F) but that seems quite a way off yet. Things are slowly improving though and I’m hopeful that in the future my identity will be more well known and accepted. On my important information sheet I used when going into hospital, I had it listed as gender: none and then sex: female, as in a medical setting my biological sex is more relevant.
Luckily, most people I’ve told have been very supportive. Johan has been amazing (the odd pronoun mistake is understandable) and is happy to support me however I need it. My social worker reacted well and asked me how he could help with it. Most of my family and friends have accepted it, even those who may not understand completely what it means. Unfortunately I’ve had a couple of people who have made it clear they won’t accept it, and that hurt a lot, but they’re in the minority. I try not to be too preachy about it, and much of the time I don’t even think about it as it’s just part of me and unless I’m filling in forms or similar, it doesn’t really affect my day to day life.
At the moment I’m not receiving any kind of therapy or treatment to help me deal with my lack of gender. Right now I’m too ill for any kind of counselling and I don’t want to even consider hormones or similar until I’m doing better. This might change in the future, and I’m looking to see if there’s an accessible support group or similar I can join in the meantime. Some people decide they need to change their body to more fit their gender (or lack of), some people are okay with how they are already. It’s hard for me to tell how much my dislike of certain parts of my body is due to being ill and in pain and whether any of it is due to a mismatch in gender and sex. Hopefully my physical health will improve enough for me to explore things further, but for now I’ll stick with my rather broken body.
All the definitions and thoughts on this post are my own, and are probably different from most other genderless or nonbinary peoples (I’m weird and have cognitive issues that mean it’s hard for me to explain what I mean). While learning about this, I used some of the resources at Nonbinary.org. I also recently saw this video which explains things pretty well (I can’t find it anywhere but Twitter and Facebook): This Is What Nonbinary People Want You To Know (Twitter) This Is What Nonbinary People Want You To Know (Facebook). If you know any decent resources about trans issues then please tell me as I want to learn more 🙂
I’ve been wanting to blog about the communication issues I’m having, but not been able to. Luckily* I’m not the only one who has these problems, so I can just link to Hannah’s blog post about it instead. This describes what I experience pretty well.
*I wish no-one had to experience this stuff, but I do feel a bit better knowing I’m not the only one.
Today is ME Awareness Day. I was hoping to record a video, but today I’m unable to speak or tolerate much light so it wouldn’t have been very good. Instead I’m writing this blog post.
On Thursday I did something huge for me. I got in my wheelchair, went out, and voted. It was the first time this year I’d been out of bed other than to go to hospital. It confirmed to me that when I get my hoist I’m well enough to spend some time in it, as the only bit that was problematic was getting back into bed. I didn’t have the strength to transfer so Johan ended up throwing me on the bed. It worked, but was painful.
Over the weekend I saw friends. Rammi came up from London to stay for a few days (and see S Club 7 with Johan) and Marga and Sue visited on Saturday with their daughter and witnessed my name change (I’m now legally Danni rather than Danielle). It was awesome and I’m glad I saw them, but now I’m paying for it.
Yesterday I was awake for about 5 hours in total. Hard to tell exactly as my sleep was very disrupted by nightmares and pain. Not unusual at the beginning of payback.
Today I woke up when the carer opened my door this morning but unfortunately I had sleep paralysis so wasn’t able to tell her I was awake. Fell back asleep she left and was woken again by drilling. I already had ear plugs in from yesterday but even with them and my ear defenders on it went right through me. Not my favourite way to be woken up.
It’s hard to tell which symptoms are worst right now. I made the mistake of drinking a milkshake so nausea is really bad right now, though hopefully the anti emetic will help that soon. Lots of coherent types of pain. Muscles that feel like they’ve been overused and ache, joints that feel inflamed (though logically I know they aren’t). Skin that is both itchy and burns. Electric shocks going through my nerves, especially my arms and legs. Chest pain that’s worse when breathing. Abdominal pain worse than the gallstone pain I had. Head which is pounding, made much worse by any movement, sound or light (I’m struggling to use my tablet on minimum brightness with my sunglasses on, so am mostly using one eye). Sore throat which hasn’t femur better in over 5 years. Random spasms and paralysis to make things interesting. Unable to speak and struggling to make noise, and can’t understand most of what Johan is saying. And those are just the ones
I can figure out right now.
I’m lucky. Painkillers help me a little bit. I only get this level of illness if I’ve overdone it. For some people with very severe ME, this would be a good day. I have my tablet so can type to communicate and try and distract myself from how I’m feeling. I have hope that when my hoist arrives I’ll be able to get out of bed more regularly and build up my time in my wheelchair. For many, that’s not an option as they’re just too ill.
Even in my good days I’m in pain, have severe muscle weakness, experience more symptoms than I care to list. Spending time in my chair sent my heart rate racing, and made me feel even more dizzy despite being fully tilted and reclined. Yet to me it was a massive achievement. I’m not scared of activity, but I’m afraid of payback as if I push too far I could relapse and become more ill than I already am.
I’ve blogged before about ME. You can find some of the posts linked to above.
This post is part of Blogging Against Disablism Day 2015. My brain is very foggy so apologies for any mistakes.
There’s an election next week here in the UK, and I’m scared. The last five years have been very difficult for my friends and relatives, and it’s looking likely that it’s just going to get worse. We’re some of the least affected I know, yet even we’re feeling the effects of the cuts and sigma caused by this coalition government. Most of it is because we’re disabled and not a “hard working family”.
I’m one of the lucky ones in many ways. When moved over from Income Support to Employment Support Allowance, I was placed directly into the Support Group without needing a work capability assessment (the Support Group is for those considered unable to work now or in the near future even with support, though the criteria is mostly unrelated to ability to work). My Disability Living Allowance renewal (I’ve not been moved over to Personal Independence Payments yet) went through without an assessment as well. Now that’s probably due to being completely bedbound and having mountains of supporting evidence, but I’m incredibly grateful. It’s also very rare.
The coalition government’s stated aim was to reduce the amount of people on benefits, especially the disability and illness related benefits such as the ones I’m on. They’ve managed to do this, but not to the extent they said they were going to, as most people were more ill or disabled than they realised and the fraud rate was much lower than they implied. What they have done is caused a lot of harm, and even deaths through sanctions, delayed and denied benefits, and the effects of other cuts culminating in people no longer being able to manage when previously they could.
It’s already very hard. If you’re not a “hard working family” (working full time – part time even if you’re ill or disabled doesn’t count) then none of the big political parties want anything to do with you. If the Tories get back in, they want to extend the sanctioning system they’re already using against the unemployed and those in the work related activity group on ESA to those who are working part time, even if there’s no full time jobs available. They want to tax DLA and PIP, reducing the incomes of the ill and disabled further. That’s before we get to things like universal credit, the benefit cap, and the other ways they’re apparently going to slash the benefits budget.
Labour have also gone full in with the hard working families talk, and have said they don’t want to be the party of those on benefits (so people like me). The Lib Dems supported the Tories with all the benefit cuts, so no matter who gets in (as with the first past the post system it will be one of the big parties, even if they have to form a coalition) it looks like it’s only going to get worse for those who are ill or disabled in the UK. UKIP are scary with their racism and bigotry, and though the Greens are the closest in terms of politics to my views they support euthanasia, which is dangerous in a society that considers disabled people worthless.
I’m too ill to work. Even the government agree with this. Johan looks after me, which means he’s on call 24 hours a day, is frequently sleep deprived, and he still hasn’t got the help he’s been assessed as needing by social services. Esther can work part time, but even though there are very few full time jobs available and many people chasing each one she doesn’t count either, despite doing voluntary work on top of her paid job.
There’s already been an increase in disability hate crime, mental illness, worsening health and deaths due to the government and the scrounger rhetoric. Friends who have ended up begging for help as they have no income while waiting months for assessments and to hear whether they’ve jumped through enough hoops, friends who have ended up in hospital because of the stress.
I hope I’m wrong. I hope that whoever is elected in on Thursday will reverse the budget cuts, tightened benefit criteria, the sanctioning system and actually work to improve life for those of us who can’t work full time. I don’t have a problem with fair assessments for benefits, or for helping those who can work with support to do so, but it needs to actually be support, not just threats to remove someone’s income if they can’t jump through often impossible hoops. I don’t know who’s going to be in power next week but there’s a chance to improve things and I want them to take it.
Been asleep all day so a short post now 🙂 Also, apologies for my blog being down- I have monitoring set up but Johan doesn’t, and being asleep meant I didn’t get it fixed until after I woke up again.
One of Vikki George’s 30 wishes (see last post or http://my30wishes.blogspot.co.uk/) is for 30 people to watch Voices from the Shadows. I have this on DVD, though I’ve not been well enough to watch it yet. However, those who have seen it say it’s a very important film about severe ME.
At the moment it’s free to watch online (until the end of the year, maybe longer) using the promo code VOICES on Vimeo. You have to register your name, email address and a password, which you can do after clicking the “rent for $3” button. You put the promo code in by clicking the “apply promo code” link under the billing information section (which you can leave blank).
The film is very emotional and is not suitable for children or young people with ME. It’s meant to educate those who don’t know the illness or the issues surrounding it. However, if you’re an adult it would mean a lot to me for you to watch it. Thank you.
This is my 30 before 30 list
But here comes the twist,
Because of my illness and disability
You will have to do it for me,
See I have these plans in my head
But I’m stuck 24/7 in a hospital bed!
I first came across Vikki George in a Reader’s Digest magazine years ago, where she was featured as a local hero for her work on Post Pals. She’s had severe ME now for 13 years, and has spent much of that time bedbound. Despite this, she’s managed to start and run a charity from bed sending post to seriously ill children. Since I became ill with ME I’ve been able to get to know her a bit and she’s very awesome!
Vikki’s 30th birthday is coming up and she wants to do 30 things for her 30th birthday. Being stuck in bed though means she needs help, and this is where you come in 🙂 On her website she’s got her 30 wishes and she wants as many people as possible to complete them. Some of them are relatively easy, others are harder, but all of them will improve someone’s life in some way.
The link to her wishes is http://my30wishes.blogspot.co.uk/. Please visit and if you can help with any wishes, do so. I want her to have the best birthday possible 🙂
One of the awesome people I’ve met since I’ve been ill is the amazing Jessica LE Taylor. I first spoke to her on Twitter, after coming across her video The World of One Room and discovering that not only did we both have severe ME, she also had some of the same symptoms I did, making me feel much less alone. I’ve since been following her progress, which includes sitting, standing and even taking her first steps thanks to intensive therapy in a private hospital.
Jessica has had severe ME for years, spending much of that time in hospital paralysed. While there, she wrote a song. Spread the Hope has now been released as a Christmas single, with the proceeds benefiting four charities: Share A Star (started by Jessica, sends special holding stars to seriously ill children), Post Pals (sends letters and gifts to ill or disabled children), Help Harry Help Others (cancer charity giving hope) and The Katy Holmes Trust (cancer charity hoping to find a cure for paediatric brain tumours).
You can watch the single on YouTube below and buy it from http://spreadthehope.christmas/
Yesterday (Monday) was ME Awareness Day. I had a couple of ideas of blog posts I wanted to write for the day, but my brother came over on Sunday and I spent too long chatting, which means I now have payback. I didn’t wake up until 5.20pm and spent most of the evening in a weird fuzzy state. I had been doing really well (last week I managed 2 hours in the living room with no worsening of symptoms) but I pushed too far Sunday and now I have to pay.
That’s the defining symptom of ME- a worsening of symptoms due to too much activity. What counts as too much depends on the person and the severity of their illness, and to make things complicated it can change from day to day, from hour to hour. The payback has various names (the most common I’ve seen being post exertional malaise or post exertional neuroimmune exhaustion) and the symptoms it causes are as varied as those of the illness itself.
My payback today consists of a worse than normal headache, pain behind my eyes, greater light, noise, smell and touch sensitivity, more pain (mostly muscle and joint pain, some nerve pain, other random pain I can’t really define), more muscle weakness, worsened coordination, worse nausea, difficulty swallowing, muscle spasms and the fuzziness I mentioned earlier. Compared to how I’ve been the last couple of weeks, it’s pretty bad, but before then this was pretty much my normal. I’m hoping with lots of rest I’ll get back to where I was.
If you want to find out more about ME, my previous blog posts about it from two years ago are linked at the top of my blog. There’s also the #MEAwarenessDay hashtag on Twitter. Jenny, Stroopwaffle on Twitter has tweeted about living with very severe ME for years. If you know any other good places please comment as I’m not sure when I’ll be up to finding them. It’s a sucky illness but hopefully there will be a cure found.
(This blog post is part of Blogging Against Disablism Day 2014. Is is hosted at http://tinyurl.com/BADday2014)
One of the hardest parts of disablism (or ableism) to deal with is how it invades your thoughts. All those insults and comments that have been said about or to me stick in my brain, and come out when my disabilities affect me. The thoughts that I’m not really disabled, that I’m just lazy or stupid or selfish or putting it on, things that have all been said to me by people aware of my disabilities.
I know logically that being disabled does not make me a bad person. Having impairments and needing help and support has no impact on my worth. Yet years of bullying, often based around my difficulties, mean I find it hard to accept sometimes. This isn’t helped by the current treatment of disabled and vulnerable people in the press, or how a lot of people talk about disabled people.
Recently on the news there was a story of a mother murdering her autistic son and then killing herself. Most of the articles were sympathetic to the mother, and went on about how difficult her son was to deal with. The fact a child was murdered because of who he was didn’t seem to matter. As an autistic person, it scares me, and it feeds into the thoughts that I’m not worth it. He deserved to live, and there is no justification for his murder.
Johan often tells me off for apologising when I ask him to help me. I can’t stop doing it though- years of being told I didn’t deserve it mean I feel guilty when asking for help, even though logically I know that I need it and Johan is quite happy to help me. I even tried to justify the neglect I suffered in the care homes for the same reason. If it had happened to anyone else I’d be outraged and want to do what I could to fix it, but because it was me and because I only deserved bad things because I’m not that ill/putting it on/it’s all in my head I felt guilty for even mentioning it.
Before my ME got bad there was no real external sign I was disabled, though I was odd enough to be called names/beaten up/literally trodden on. I was blamed for my difficulties, often by the people who should have been supporting me. The result was years of depression, and even that came with it’s own disablism. Though I’m no longer depressed, I still have times where I think I’m lesser because of my disabilities. I know I’m not the only disabled person who has this.
All people matter. Everyone should get the help they need, regardless of who they are. If someone can’t do something, that should be accepted and they shouldn’t be treated badly because of it. They also shouldn’t be denied the chance to do what they are capable of. No matter what people think, this is true. Now I just need to convince my brain of this.