OUR Side Of It: Not Dead Yet: This Me Isn’t Going Before You.

You’ve WORKED with disabled people, you cared for your mother or father with dementia or you’ve had depression or some other chronic illness, or been suicidal.  I do know how soul destroying that is, but the moment you start on the topic of assisted dying and tell me it is not about me, you just sound like another able-bodied person telling a disabled person how it is going to be.  You are probably a decent caring person. I’m not even questioning how much you care, just how much you are listening while you are surviving without having to wonder whether people think so little of you that they would kill you and say they were doing you -and society at large- a service. I’m not accusing you of anything, but when you get into a euthanasia debate with disabled people I don’t care how many other people agree with you, I’m through with you, and you can be very proud you have all those other people on your side but whatever you choose to believe, for what ever reason, this Is Not How We Want To Die.

Any disabled person knows very well what happens. It isn’t just about end of life care, it is about rules and care packages that doom people to care homes if they need 24 hour care and worse, if  care is costly.  It is something that you cannot understand unless you have been that person on life-support, or have lived all your life knowing your fate was in the hands of others. Not beside someone, or caring for them, which is difficult and heartbreaking, but living your entire life knowing you are only here because someone did NOT give up on you.  This Is Not How We Want To Die.

I get tired of people who speak on this topic without considering -and often simply dismissing- what it means to disabled people to hear people discussing our fate so glibly. It’s like people telling you to buck up your ideas and work when you are far too ill or disabled to do so – only a thousand times worse.  If you don’t realise our lives are already at risk, that even without euthanasia laws in place there are thousands of people like me dying this way every week, then I’ve wasted my time speaking frankly on many other disability related subjects, because your whole heart is not with us and you are a fair-weather ally.  Experiences in your past give you a different opinion on this to me, but I have those kind of experiences too.  It hurts me too, especially if I’ve already asked you not to disregard that.  But more important than anything else, this is a debate that you should really NOT be having with a disabled person. If you are speaking to us on this topic then you need to realise that for once the this is not about elderly people, or sickness, or about what you would want at the end of your life, but it is about us. This time you are facing us.  And This Is Not How We Want To Die. 

A friend told me of his struggles to keep his daughter out of a ‘care home’ where they would withdraw her feeding tube and she would die in a matter of days or weeks- not because of organ failure, not because she was suffering, but simply because of cost to the NHS. And that is not an isolated case.  Disabled people have to fight not to be euthanized whenever we are sick, whenever we get pneumonia or an infection, whenever we are in ICU.  Baroness Jane Campbell has lived a life dedicated to equality for disabled people and was a leading instigator of the Spartacus Report that launched the attack on the Welfare Reform Act and Atos, without which we would already be lost. Yet doctors repeatedly tell this strong, intelligent, determined woman that it is “time she gave up and that  due to her breathing difficulties it was “time to go.”  And This Is Not How She Wants To Die.

I am so scared of the consequences of appointments such as Mordant’s or of laws and changes in policy regarding euthanasia,  that I will not have another operation even if it kills me, that I wouldn’t even have the operation that would have meant we could have children in case it makes me so ill that it could be decided I have no mental capacity.  If you knew the things that are happening in modern care homes,  perhaps you would understand how I feel. As a less than able bodied person who has been able to do things with their life but laterly has had to deal with the stigma and discrimination against disabled people that has driven so many to suicide world-wide, not only do I feel a failure, I also know this Government can kill me or incarcerate me on a whim. Things are VERY different now than they were ten or twenty years ago.  Perhaps they always were for people like me. I have friends who were abused worse than you or I could imagine, whose own parents said they should have put a pillow over my friends face and you say to me, that “Any parent with a child going through all that would eventually have to admit it’s time to let go.” But This Is Not How We Want To Die.

For what it’s worth, I know  that as a disabled person my opinion doesn’t really count to most people, and so we need those who will hold on for us and with us, those who hold us as valuable and worthy beings, so that one unknown and uncaring  person is not capable of legalising our deaths.  Unless your own situation is the same as a disabled person’s, however sick your parent, friend, wife or husband,  you do not have the right to discuss this in the presence of those who have already been more directly affected than you will ever be. To give up our right to life on a Governmental whim or the whim of those who worry about Atos and the DWP and feeding their families, who protest and blog yet who will sell us for the mirage that they will then live longer, makes everything else we have fought for together pointless. That’s why petty arguments don’t really matter. I have what is left then that’s it. I really don’t want to get so depressed that I hand them my death on a plate. Because  This Is Not How I Want To Die.

So, yes, it is very personal. If you can argue with me on the basis of ‘Right to Die’  as if it is about any of those things above rather than about my Right To Live, then I do not think you really ever saw what I write about my situation or about disability issues. You can go back to work, to your life when you finish this conversation but do you really know what I face? You have seen pictures of me, that is all. STOP it. Because  This Is Not How I Want To Die.

                                    This Is Not How We Want To Die

 

 

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“But….. How Will You Manage?” Surviving The Naysayers (and the Holidays)

Join me in an Arrrgh?

ARRRGH!

How would you cope?” I get that AS a person with CP and yes, it’s always folk who know nothing about your life. It took me _years_ to learn that and everyone from my mother to my best friend poured cold water on any project that wasn’t in step with what THEY thought was right for me. Where were you all my life, people who get this too? I spent years feeling deflated and demeaned instead of kicking the ‘how would you’s out! And yet the minute you fall into their moan and join in they tell you that you’re really very LUCKY considering” (but that’s another story!)

All the people who suddenly thought my ‘poor’ husband must have ‘sooo much to cope with’ the minute I got married… “Well, obviously he loves me and it’s no big deal for him, maybe YOU just do it for medals?” Even though all my life they’d downplayed my CP suddenly it seemed that a man who did most of the cooking (because he’s a better cook) deserved a halo. What I should have said of course was, “You mean men can’t cope unless a woman does ALL the cooking?” Instead of which, I felt diminished!

Joking aside, when you LOVE someone its amazing what you can do that others who see other people as a perpetual drain on THEIR time can’t! As my friend said about the time her toddler got away from her and fell into a pond- “it’s amazing how you learn you can levitate  horizontally AND fly when your toddler is heading at speed for that un-fenced pond !”  Yes going abroad with a disability takes forward planning but -people do it all the time! Sometimes you’re more tired than if you’d be if you’d stayed home – that’s a genuine issue for some folk. – and I do worry when I go camping with my DH that he gets tired. BUT it’s no big deal for him, he likes spending time with me, just like the thought of seeing the sites with your kids thrills you.

It took me _years_ to learn that it was just a twisted way of saying, “I don’t think I could or I don’t think you should because I know nothing about it”. This confirms my feeling that the ‘how will you managers’ are the type who spend time with _their_ friends and family for what THEY get out of it and purely to relax in fact some people resent spending time with disabled people because they cannot pretend that life is all glitter and rainbows. Sometimes we do have to cancel, go home early, want to talk about Welfare reforms and don’t think a hard life is not being able to afford a second home in Umbria! These people think their life is tough, that they are hard done by BECAUSE they “have to” get up, go to work, help others and interact with people who don’t think THEY are the centre of the universe. It’s just not so apparent until they meet a disabled person and have to project what a drag doing things for others is onto us!

Do they do it with bad grace? You must do it for medals?  Are they mediocre, you must be saintly!

Whether you’re a carer or a parent or a disabled person, it is their own inadequacy which forces them to make YOUR life look like a big deal. If it is a major effort deserving a halo having a disability or being a carer then their life must at least be pretty tough and deserving of sympathy. OK. We deserve halos for putting up with comments like THAT, there are things everyone needs a can of ‘glo halo’ for ….It’s the same impulse that makes them think that ‘everyone would have to do everything if you had kids’. It was always the people who hadn’t had kids themselves or were not natural parents who were the ones who told me that it would be too hard for me, never the ones who enjoyed parenting and had happy well-adjusted kids – imagine if I’d done a BETTER job than they did and thereby showed them up – so me parenting with CP _must_ be a burden for others…. (funny how I did all my own stuff at Uni?.

Thank goodness in the end we see them for the toxic people they are.  The fewer people like this around your kids the more he and his sister will grow up to give them an old-fashioned look when they try it on THEM. These are the ones who say to your child’s face “Your mother must have had such a lot to cope with.” I’ve had this said to me and I’ve even had it said to me by disabled people. I’m a bit of a self pitying type myself given how mild my CP was and that’s largely down to my mother’s negative attitudes and the people who stood around looking saintly that they had to put up with me. We could have got on with it but we were the kind of family where everything’s a drama.  Again they are indeed expressing that THEY would feel inadequate to tasks that parents of kids with CP, partners or the person with CP would find easy because if your part deserves a halo their role as a ‘friend of that poor family’ will look appropriate, average and pretty good instead of the patronising rubbish it is. I’m working on a blog post about this and as it is obviously an issue that parents too come up against, I’m even pleased that it’s come up as it’s an idea which wants challenging. You will find parents who WANT pity and pity their own kids and (and disabled people too) and it’s dangerous because it leads back to a world where we are pitied for being disabled, pitied for having a disabled family member and ultimately pitied as a society that we have to put up with disabled people at all.

Whenever the idea is outside someone else’s comfort zone and it’s always folk who know nothing about your life. BUT: YOU are the expert on being a mother with a son with CP so you know whether or not you’ll manage – not them. I’m sad that as parents folk get this too but the parents who challenge it are the ones who will teach their kids to challenge it too. Not the same as ‘you can if you think you can-itis’ just that it is your life and it will be their lives and people like taht are just talking to hear themselves talk and will find something silly to say when you have a great time! All the people who suddenly thought my ‘poor’ husband must have ‘sooo much to cope with’ the minute I got married. Who said exactly the same when we planned to move away from _them_. Even though all my life they’d downplayed my CP suddenly it seemed that a man who did most of the cooking (because he’s a better cook) deserved a halo for ‘doing all the work’ and ‘putting up with me’. The fact that what I actually had was a husband who pulled his weight when we were both working didn’t cross their minds,  just as this woman hasn’t considered that taking ANY kids on holiday makes parents say, “Oh, GOD, never again” at least once!

The ‘how will you managers’ are the type who spend time with _their_ friends and family for what THEY get out of it and purely to relax and they cannot imagine the slightest effort for another person In fact they are afraid that you show them up as lazy and lacking commitment. I’ve met people who resent spending time with disabled people because they cannot pretend that life is all glitter and rainbows and because it isn’t _all_ chill time. Sometimes we do have to cancel, go home early, want to talk about Welfare reforms and most importantly we don’t think a hard life is a feud with Mrs Next Door and her overgrown hedge.  It is their own inadequacy which forces them to make YOUR life look like a big deal. Yes, life is tough sometimes but to them if it is a major effort adding a halo for having a disability or being a carer bigs up your efforts and makes their struggles look at least pretty tough and deserving of sympathy. . We deserve halos for putting up with comments like THAT, but there is some pretty messed up thinking going on if someone whilst giving you a halo makes you feel they kicked you in the teeth?
It’s the same impulse that makes them think that ‘everyone would have to do everything if you had kids’. It was always the people who hadn’t had kids themselves or were not natural parents who were the ones who told me that it would be too hard for me, never the ones who enjoyed parenting and had happy well-adjusted kids – imagine if I’d done a BETTER job than they did and thereby showed them up – so me parenting with CP _must_ be a burden for others…. The fewer people like this around your kids the more he and his sister will grow up to give them an old-fashioned look when they try it on THEM. These are the ones who say to your child’s face “Your mother must have had such a lot to cope with.” I’ve had this said to me and I’ve even had it said to me by disabled people. I’m a bit of a self-pitying type myself given how mild my CP was and that’s largely down to my mother’s negative attitudes and the people who stood around looking saintly that they had to put up with me. We could have got on with it but we were the kind of family where everything’s a drama. Expressing that THEY would feel inadequate to tasks that parents of kids with CP, means that  if your part deserves a halo their role as a ‘friend of that poor family’ will look appropriate, average and pretty good instead of the patronising rubbish it is. It is obviously an issue that parents too come up against. It’s an idea which wants challenging. You will find parents who WANT pity and pity their own kids and (and disabled people too) and it’s dangerous because it leads back to a world where we are pitied for being disabled, pitied for having a disabled family member and ultimately pitied as a society that we have to put up with disabled people at all.

I do know what people like this do to the confidence. I’ve been mulling over what they did to me with the ‘how would you manage’ a lot lately and the downside of it is that if you give in they say either, “Oh, how sad, she can’t manage, it shows how hard it must be to have disabled kids/be disabled” or they take great delight in telling you how you should be trying much harder because other families with disabled kids /disabled people manage it!”  They cannot pretend that life is all glitter and rainbows and because some parents want pity because they are part of that group that finds other people an effort and somehow became parents so that everyone will be impressed by their sacrifices to their kids and then – had a disabled child They want pity and pity their own kids and and it’s dangerous because it leads back to a world where we are pitied for being disabled, pitied for having a disabled family member and ultimately pitied as a society that we have to put up with disabled people at all.

As the person with CP whenever the idea is outside someone else’s comfort zone and it’s always folk who know nothing about your life.You are the expert on being YOU so you know whether or not YOU’ll manage – not them. I’m sad that as parents you get this too because as a disabled person I got the “stupidity guide to how brilliant disabled kids can be really considering” mixed in with times when it suited other people to say “she won’t manage” usually when they couldn’t be bothered to organise support or didn’t know it existed. It is your life and people like that are just talking to hear themselves talk and will find something inane to say rather than not be the centre of attention.

People said exactly the same when I got married, wanted to start a family and we planned to move away from _them_ . Even though they were never much help anyway suddenly it seemed that a man who did most of the cooking (because he’s a better cook) and wanted to marry me because he loved me deserved a halo for ‘doing all the work’ and ‘coping with me’. The fact that a husband who pulled his weight when we were both working should be normal didn’t cross their minds just as this woman hasn’t considered that taking ANY kids on holiday makes ANY parent say, “Oh, GOD, never again” at least once!

Some people see other people as a perpetual drain on THEIR time and can’t seem to imagine anyone else would be different! The “How will you manager” spends time with _their_ friends and family for what THEY get out of it and they cannot imagine the slightest effort for another person. In fact they are afraid that you show them up as lazy, selfish and lacking commitment. Magnifying your commitment makes them look average instead of pathetic. These people think they are hard done by that they have to get up, go to work, help others and interact with people who don’t think THEY are the centre of the universe. It’s just not so apparent until they meet a disabled person and then they have to project what a drag doing things for others is onto us! Do they do it with bad grace? You do it better and make them look bad? You must do it for medals because that’s what _they_ would want. Some resent spending time with disabled people because it isn’t _all_ chill time and their own dramas look small next to your actual struggles. Sometimes we have to cancel, go home early, want to talk about Welfare reforms and we don’t think a hard life is a feud with Mrs Next Door and her overgrown hedge or not being able to afford a second home in Umbria!

And if we’re always doing tricky stuff, what could be easier than a new tricky thing
Yes going abroad with a disability takes forward planning but people do it all the time! Sometimes you’re more tired than if you’d be if you’d stayed home – that’s a genuine issue for some folk. – and I do worry when I go camping with my DH that he gets tired but it’s no big deal for him, he likes spending time with me, just like the thought of seeing the sites with your kids thrills you. Where are you off to, by the way?  
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Silencing in Child and Adult Sexual Exploitation

“Spicer warns that it is very likely that vulnerable adults are abused across the UK, and rightly calls for an urgent review of sex exploitation laws to tackle this difficult area. Authorities should also learn from Newcastle’s work in ensuring that abused children are supported into adulthood, in recognising that vulnerabilities are not always obvious, and in raising awareness among everyone from hotel staff to teachers.

VULNERABLE ADULTS“…

Spicer has details the press are not interested in passing on. I’m angry. Because I came to live here because of a child rapist. Because I keep speaking out about the ones where I used to live. Because when I lived where _I_ was being abused I wasn’t afraid but I am getting more scared as time goes on, more bloody isolated, more bloody convinced that the biggest hush-ups happen when people appear to be finally getting to the truth. Because notice that as with Saville none of the disabled and vulnerable victims are getting to speak up. Believe me We try. I am sick and tired of the words ‘vulnerable’ covering the truths that lay behind Saville, behind care home abuse, by the word ‘vulnerable’ being treated as if it works in a vacuum and as a vehicle of victim blaming (it is – look it up) This is your nephew who started out raped and ended up dealing drugs for dealers. This is your friend whose parents even before austerity were scared of the ‘burden’ she might one day be as a disabled person married her off to a much older man. This is why the writing and advocating I can do is through short posts and not on my blog because it takes a mental effort and an ability to say ‘this is me’ I just don’t have.

Depression, fear, silence and keeping my head down.  This is the thread that ran through the 80s and 90s for me when yuppies were getting rich quick when parents and peers were enjoying the prosperity and the media driven glow of beauty-perfect images, clothing, fashion, socialising.  This was the era in which others were happy and shamed me because I was always anxious and often over-thinking. The words “child sexual exploitation” were and are never spoken because I escaped the worst that abuse could do because I had parents to return to – even if they didn’t care what had happened to me. I escaped being interviewed or supported and ironically I escaped being protected because I had parents who could do it, relatives in the police force who advised them not to speak up or fight, just enough privilege to paper over the cracks and ‘move on’ and pretend it hadn’t happened.  But it did. And PTSD, Cerebral Palsy (CP) fatigue and pressure to be normal all contributed to the brain tumour that has left me needing more care than I could ever have imagined, yet conversely trapped in a life, a geographical area and a marriage to a man whose nephew was raped and who then began the same cycle of contact with the world’s underbelly that constantly reminds me that I grew up on the fringes of child sexual exploitation.  This is the poison that we don’t escape if our parents are middle-class or rich: we may manage to build some kind of a life in the face of but it never leaves us. Abuse is why we were anxious ‘made bad choices’ ended up settling for less than we wanted or were worth or had fought for. This is why we can never rest, why society silences us, takes our children, why our lives are lived isolated from family. look less than perfect, occasionally dissolve into breakdowns. This because society turns away from and pretends it isn’t happening unless it can fit it into neat little boxes that are easy to explain to the people who are NOT vulnerable.

I am vulnerable. But this is intolerable, this is erasure this is insupportable.  I have a name. My perpetrators have names. and jobs and positions of power. And I have spoken up over and over again and been unheard.  They have power bu despite my education I am “on benefits”, I don’t have that power and I don’t have the resources and I fast feel I don’t have the courage and I’m tired and I don’t want to say #MeToo any more about something I have been saying for 20 years. I’m angry that 700 girls and women were abused – I have done that. I was still in hospital after surgery and I had to wrap my mind round coming to the Rotherham of the North when I had thought we were just one family affected by tragedy twice over. I am angry that the authorities know this is going on and keep pretending it is some sort of local, contained racial issue. What are the other demographics in this? How many were disabled – hints are made so how many were learning disabled, how many had mental health issues? How many were over 16, over 18, over 21 or 25?  How many were victims of the ‘care’ system? How MANY had no social worker or care plan. How MANY were disabled adults. How many have not come forward? How many came forward and did not get justice? How many were deemed too disabled, too complex too BRAIN DAMAGED to interview?

And yet what are we ever going to do to admit that disablism and racism and sanism and poverty-prejudice is MOST OF THE PROBLEM? The victims don’t get together for cosy chats. WE don’t get to meet others in the same boat. You can bet that they are still isolated, many of them with sod all social services care in reality if this could happen in the first place. I am angry that people are still surprised that CSE happens to disabled people as if we were somehow exempt from this when in fact given our odds of being sexually abused is so much greater. How many are still out there still hurting and being hurt and how many perpetrators are still operating

A month or so ago a young blind woman in Newcastle in “supported accommodation” died in circumstances you can bet we aren’t going to hear any more about. There were mate crime elements written all over a death that also had potential sexual exploitation patterns embedded in it. What are we going to hear about this? Nothing. What will the disability community ever even find out about? Nothing. Yet we know that Carol Ann Gallon was a gay woman who picked up vulnerable girls for the abusers. We also know the police in Newcastle knew they were doing an operation in 2014 against sexual exploitation in Newcastle and that even while Gallon was on bail or shortly after I could be approached in the LGBT quarter, by a disturbing group of people in ways that were obviously intended to groom me for exploitation by people who thought I was younger, more vulnerable and less aware than I was. This time, luckily I had someone to phone, someone I knew would listen to me. Not last time. Last time I didn’t I’ve been here before. And the police didn’t listen that time either. And i didn’t get the shoulder number of the officer who told me to just tell security in the club and that I’d ‘be fine now dear’ because I was with my carer now (!) It is no wonder that all I can feel is shame and fear that again I had something that needed flagging up but my biggest fear is that the police will still see it as ‘not worth following up.’  The drip, drip is not being seen as significant. The dots don’t get added up and we die inside or die.
We also know that there are and were boys and men affected by Child Sexual Exploitation yet we hear almost nothing on this.   We are getting fed on shit. The public is being fed half a tale. We are being kept isolated, denied the details so we don’t know and can’t fight back,  a process of public gaslighting and denial, so that cognitive dissonance says it is “only you” this happens to, only conspiracy theorists obsess about child abuse, about disability abuse, “this is your PTSD talking.” Threats from former ‘friends’ and colleagues cast a very dark light on even groups and hobbies that seemed safe even if they were not ethical, threats of being reported for harassment from abusers who work in care, in the NHS in positions of authority, in mental health can keep us shut up, silent, fearful, grateful we are even outside of the system and not in prison for speaking up. That it isn’t the tip if the iceberg, that it doesn’t leave scars. That you are not a person failed by a system that never kept you safe from age 11 on but a “scrounger” a person ‘on benefits’ , a failure and a burden. And our financial and family situations – crap as they were and sick and dysfunctional as they were – were the only reason we didn’t end up in the care system and then dead in some house rented out to dealers. Any time from age 11. I want to know. I want to be heard. I haven’t been silent but I HAVE BEEN WAITING 20 years for change and justice! For all, not some of us. . Here, there – everywhere. In cities, in the country side. To those in the system, to those that privacy can hide and keep out of the figures. Rich man, poor man, beggarman, thief. Thieves of lives, of hope, of happiness, of a reality others take for granted, of a life without fear or trauma or PTSD or benefits. I have a voice. I am not voiceless. I want us all to be heard.
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Language, Disability and Feminism

I invite you to think about the Independent’s use of ‘idiot’ in a headline about disablism. Then there’s this failure to call out ableism and sanism. Yes… “sanism” is a thing.

Clymer wrote to one who woman questioned his editorial judgment. “Fine, we’ll talk about privilege. What about your idiot privilege? It would seem you’re so used to people not calling you out for being an absolute fucking moron that you’ve become blind to how your asshat actions affect others.”

“Idiot privilege”?  “Moron”? Who the heck is Clymer and when is he clyiming down on this silly stance? Some men do seem to be hurt by the criticism that women need feminism. Some able bodied people seem hurt by the possibility that disablism is an issue that needs calling out and plenty of people seem to feel that the acceptable terminology for any woman, politician or opponent or behaviour they would not use is ‘mad’, ‘insane’ ‘mental’, ‘moronic’ or ‘idiotic.’

I haven’t had time to worry about ‘feminism’ since I left university because the intersecting demands of everyday disablism literally drove the idea that I could be a feminist or a woman-first sort of feminist right out of my head. Proof indeed that I needed feminism but domestic abuse and mental breakdowns don’t leave much room for seeing ones problems academically. Ones problems are so deeply ingrained they are invisible. There isn’t time to think when stuff is intersecting so fast there’s no room to discuss it.

Eventually of course you work out that feminist issues are deep rooted in any culture which objectifies, patronises or minimises.

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Eugenics, Murder and “Emotional Labour” After Tragic Events

A couple of British disability writers just drew all my thoughts together in 10 seconds flat on something called “emotional labour”.

Emotional labour is when it takes coaurage and energy even to think about putting a background together on a topic so taht people who do not belong to your minority group will understand what has happened. Emotional labour is feeling beaten down by doing the work becvausae you anticipate the criticisms from people who have never read an academic article on the topic before you even start! Emotional labour is when you feel you just dug a ship canal single handed with a lead shovel after 5 hours at the computer and face it, who doesn’t feel that way with a disability most mornings?  I am so grateful to USA activist friends however anything pans out, friendships, world politics and all, for explaining to me WHY it took it out of me to explain disability issues and pointing out that sometimes non disabled people don’t have the right to be educated by us, after all, there is Google!

“Just Google it” is my new slogan for whether someone who wants to know, “What is wrong with you?” or “What is there to be proud about being disabled” when I dare to present myself in an upbeat fashion.  “Just Google it” is for when a topic has so many hits it is the top topic on disability yet you get asked the question every time someone sees you have a disability.  Google itself being something of a dominant culture framework, they’d kiss a lot of frogs in document terms before they find the info we’d want them to find but emotiomnalk labour well, emotional labour is when doing the case-by-case emotional labour for people who ‘don’t think’ X happens” for the 1000th time….that week. No more! People who are not your minority can sometimes be so dogmatic that for years I read their denial as “That’s ridiculous of you” as a staement taht actually i was imagining things and my experiences had not really happened to me.  For example the total out of work benefit to disabled people at the time of writing is 3% of the whole bill yet the public see a fraud in every wheelchair.  Yet their conviction goes so deep in scorn  you would believe anything else is true that you find you forget you actually have the facts.

And “making myself small” ends here too: trying not to lose able bodied friends who won’t understand that this is the current big issue of the disability world, access, choice, respect, education, _right to life_ – their scorn and derison and reduction of your life to the benefits bill.  I’m not happy with specific parallels with other movements, I understand how dangerously reductive that is and I call them out a lot these days but that human behaviour forms similar patterns time after time tells me a lot about the pushback and how to handle it as a political not a personal thing. Folk with their personal experiences of end of life care have a valid point and so have I. I’m trying to keep in my head the personal stories of all the people who told me why right to die mattered to THEM means, I’m trying for balance and love while taking no prisoners on my opinions either 🙂 Valid as all our varied experiences and feelings and pain is none the less pain warps an ability to debate or learn together.

A bunch of nondisabed people probably won’t write thoughtful ally pieces on why the attack on a Japanese care home of disabled people was dreadful.  Won’t fly the Japanese flag with a wheelchair symbol on their profiles or at least not for long.  If you don’t see people copying that strong and telling phrase that has captured and divided conversations worldwide, when you know it won’t come up because it takes a public sense that something is of equal or greater value to ones own life to get it there. Silence tells you you are alone.  We won’t see  protest or response or acknowledgement that the disability community just lost 19 people and  50 odd injured. We had protests against the film , “Me Before You” on this VERY topic and I have lost so many friends by speaking about my own feelings when “assisted dying” comes up in conversation. Like most debates discussing disabled people’s right to choose ends in acrimonious personal clashes and ad hominem debate with little real awareness of disability as a civil rights issue. here in the UK most non disabled people don’t see disability as political beyond rights to ramps and their own attitudes to welfare.  Yet WE still know we fear that yet again we will hear “You have to make the right choice” sheould we be diagnosed with little time to live, we really fear it, we have heard it before but we are told it is paranoia because of able bodied fears of disability and death. Effectively the non disabled fear of not getting the usual privilege, that “If you have that choice, I might not get mine and I am afraid of not getting choices and I am used to choices and I fear lack of choice, a slow death or an unwanted pregnancy.”  When it comes to a mass murderer who _called_ what he was doing ‘euthanasia’ where is the horor and protest by pro euthanasia groups saying that is not what they meant when they said euthanasia? That’s a bit worrying if you are disabled. The debate about “dignity in dying” we are told is about all people’s choices – our choices – sudden suspicious silence. Except we are never told “This is about everyone” so much as we are told, “Shut up, this is about everyone else”. Is it lack of engagement or that what is wanted by the non-disabled euthanasia lobby just happened? Collateral damage is the kindest they could call it, yet to me the killer’s manifesto and the coverage shows how much the eugenics and euthanasia debate influenced this killer’s choices. He laid out his manifesto in detail. And it is one I have had people express to my face many times – word for word.

The Japanese attack got a 30 second segment on ONE BBC news programme because the BBC is very pro assisted dying. Perhaps because it is Japan, perhaps because it is disabled people but in a hate-crime terror-threat aware world we are told that “this is not political”  So Terry Pratchett, Peter Singer and people who choose assisted dying get whole programmes and televised deaths but “angry crips” (aka activists and campaigners) get labelled ‘terrorists” and the press coverage focuses on the good citizens who came out to support the far right.  We should be glad we get…the Paralympic adverts Given what is NOT being covered about the murders in Japan.

 

When it comes to a mass murderer who _called_ what he was doing ‘euthanasia’ that’s a bit worrying if you are disabled. Where’s all the choice and all the debate then? I do think we won’t see its equivalent protest or response, much as we may hope to.

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Disability “Work and Health Programme” Mental Illness, Autism, Learning Disability and Musculoskeletal Issues: MY side of the ‘Work and Health ‘Conversation’:

The expectation is always that we have all had the support younger generations get and in some cases the younger generation is assumed to have had the support we were given which has since been cut or become much harder to access at a lower level of need. Many of us did not have autism diasgnoses because none existed, some of u8s did not even get diagnosed with cerebral palsy until our bodies began to fail from a lifetime of pushing ourselves, Many of us were shunted onto DLA and SDA on our 16th birthday because it was easier than finding us appropriate employment and still many of us who worked and worked and worked at school too fulfil that promise that “If you work hard enough you can get a proper job” burnt out from a combination of overwork, “minority stress” and the long term mental health affects of abuse.
My final SEN report at school stated taht without proper mental health support I would develop mental health difficulties and such was the case. Long term emotional and sexual abuse at school was ignored and then exacerbated by an assault by a sexual exploitation ring in my later teens. I had gone to college and university and reciwved excellent grades but I also needed a great deal of one to one support, struggled to keep up and acquired only specific academic skills slowly with my learning difficulties such as dyscalculia making many jobs often taken by students on the same academic level impossible. Both doctors and tutors agreed I hasd burnt out and could not go on but no support was offered and with no prospect of making my family proud ‘despite my disability’ they soon ostracised me and forceed me to get married so that I would not be ‘their problem’ any more.

Owing to parents who lived in the era when to have an autistic child was heavily stigmatised as ‘bad parenting’ my parents disguised my autism as ‘learning difficulties’ and I grew up being taught that all my cognitive and learning difficulties wererthe result of either my personality or my cerebral palsy,and taht any autistic traits were simply abnormal and a nuisance leading to a lifetime of anxiety and depression. By the age of 18 I had not just adrenal fatigue but a full blown pituitary tumour necessitationg lifelong steroid treatment and monitoring, Post Traumatic Stress Disorder from assaults and abuse and Post Impairment Fatigue Syndrome that was misdiagnosed as Depression and ME/CFS for a decade, poorly medicated leaving me housebound for months at a time and reducing many of my hard won physical and cognitive gains to nothing. I was lucky in some respects to be part of the first generation to recieve non segregated schooling but taht also meant I was exposed to everything from teachers who punished me for laziness because they did not realise I had disabilities, the endless anxiety that I must work harder and harder to achieve 100% (I took teachers telling teh whole class we were lazy literally and had reduced the hours of sleep I got down to 4 a night by the time I was 16 in an effort to keep up.

I was once an energetic, highly skilled individual who had been taught to believe taht those skills would ‘overcome’ (sic) the impairments and taht employers would rush to employ someone of my abilities. Often those prospective employers were the people I had worked with as a student and yet the tune changed when I graduated and everyone thought “somewhere else” would be easier. There WAS and is no suitable disability employment in this area (I have tried many schemes and they are little more tahn a way for private enterprise to gain money and squirrel it away for doing nothing while pretending to support people with disabilities. Nor does suicidal depression, abuse and repeat sexual assault make for a person who can work easily in teh outside world. If they had wanted the person i was when I was 16 they should have protected and supported the many disabled young adults who came forward in the 90s with high hopes instead of making us silent victims of the rapists, paedophiles and addicts who so often attack those who they can see society and families value so little.

We may start out with one condition or many -and many of us have muskuloskeletal conditions, learning difficulties AND mental health issues to start with but the key point here is not what WE are but what those non disabled people who surround us do in response to us. Recent research has identified something called “minority trauma” and the majority of disabled people probably experience it at some point. Stigma, shame, social attacks and isolation, physical, mental and sexual abuse and violence are our daily reality and its effects are trauma. The DWP is only the next level of institutionalised abuse and a continuation of our traumas and like so many of our previous abusers they know society does not care how they treat us and in many cases with back them up and be their ‘flying monkeys’. They know exactly what they are doing, they get a kick out of it, and most importantly, they know they will escape all retribution because there has never been a time in history when disabled people have been truly valued.
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Really POLITICAL: What Disablist Language Tells Us About How Much People REALLY Know About What Makes Disability “Real”

MP for Norfolk, George Freeman has labelled recent tribunal rulings on benefit decisions  “bizarre” and claimed that tribunal decisions now mean benefits are being given to “people who are taking pills at home, who suffer from anxiety.” Well, yes, quite a lot of disabled people take pills and are at home. It kind of goes with being unable to get out of the house! But it’s interesting you should say that, George. Does he mean that the only people getting PIP for anxiety should be those in long stay mental health institutions? Because frequently they have to fight just as hard to get benefits as those with both  cerebral palsy (CP) and C-PTSD and anxiety who take antidepressants but manage still to live in the community with help, support and full-time care. Or does he perhaps  mean that only disabled people who are seen out and about looking suitably stereotypically ‘real’ being ‘inspirational’ qualify and that somehow being too ill to leave the house is proof you have less wrong with you than someone who can get out and about and be inspirational while doing it? And then hey ho, that old chestnut, that tired old phrase of the clueless Blue majority, ” “We want to make sure we get the money to the really disabled people who need it.”   Responding to criticism online to his interview on BBC 5 Live’s Pienaar’s Politics, Mr Freeman later tweeted that he had suffered from anxiety and depression in childhood, adding: “I don’t need any lectures on the damage anxiety does.” Which if anything, is a worse gaffe than the first one. Well apparently he DOES need a lecture. So here goes:

Of course someone who says what you said about having had anxiety and depression in response to criticism now deserves a free pass to say whatever they want about anxiety and depression. And of course the fact that what you say sounds just like the sort of thing ignorant Joe_public who knows zip about disability would say is pure coincidence? Forgive us, but mysteriously “ex-disabled people” who “got better” but can now conveniently claim absolute knowledge of the whole experience of disability are two-a-penny where ignorance and manipulation needs to be cloaked in a veneer of superior knowledge.

“I know what disability is like so therefore I know better than the disabled person who has just corrected me how to talk about disabled people” is at the top of the list of assumptions disabled people dread coming across when non-disabled people haven’t the guts to apologise and admit they made a mistake and actually know very little about disability. Despite the disabled person or their allies having already called out a lack of knowledge or etiquette, it is somehow expedient for many non disabled people to claim a disability when challenged even though in fact their knowledge of any particular issue is so thin as to be akin to a claim that child abuse is all the fault of immigrants or to have good friends who are gay if pulled up for biphobia. In each of the foregoing, the person pushing back is subtly indicating a lack of knowledge of the things that cannot be used as bargaining chips within the social groups concerned yet expects the claim of superior knowledge to carry the day. To claim to _be_ part of the culture you have just demonstrated you despise and disrespect is highly problematic but in the case of disability a broad unsubstantiated claim to be part of the group you wish to talk down to and control can be used because that group is perceived as somehow based upon experience alone and without cultural basis, specific identity markers or specialised knowledge. It is also simply harder to prove that someone has never had a disability because it is assumed that past disability will be hard to disprove. Blatant cultural appropriation is harder to disprove partly because disability is not seen as a culture or an identity. Taking the appropriation route out of a misstep claiming absolute knowledge indicates that people consider that no specialist knowledge, no culturally specific phrases belong to disability and that disability is a thing owned by all because all may one day become disabled and because culturally (though it is often more expedient to ignore this) disability walks among us in our communities whatever our race, gender, sexual orientation or class and can therefore be claimed by all even though for the most part it is ignored, unwanted, stigmatised until it is made a political hobbyhorse.

So. How am I to prove that someone has never been disabled or never had chronic illness when someone who criticises disabled people for “sitting around at home all day” responds with, “But I know about this because I had depression” or “I know about this because I have worked with disabled people” or “I know because my wife/mother/cat/ goldfish/boyfriend had it”? The answer of course is that I do not need to disprove or prove someone’s state of health – in fact ‘checking up on’ a person’s disability based on its medical markers is a behavior that is not commonly found amongst disabled people and is considered ill-mannered largely because it is founded on disablist notions of the root of disability. Non-disabled people faced with the criticism of disablist assumptions or called out for ill thought out comments make the mistake of assuming disability has no culture and no identity and thus fail to recognise that you cannot appropriate the _experience_ of disability simply via the markers that non disabled culture recognises disability as being; that of ‘having’ a disability or having ‘suffered from’ (sic) an impairment. They fail because standing outside the community looking in, they have no knowledge of the conversations that go on, of the experience of diagnosis (or the hell of non-diagnosis over years of distress and disbelief) of the growth into maturity of ones early confused feelings about finding oneself isolated and treated differently by society, a growth that is often a growth into deep and often analysed feelings that few non disabled people are aware of, of the currency of information that is passed between folk within different and overlapping disability circles; chronic illness, cognitive impairment, hidden disability, congenital disability, mental illness, physical disability, childhood ill-health, depression, and within the wider circle of disability as a whole.

Within the culture_ of disability the physical fact of sickness or mental illness or impairment is to some degree a side issue in our discussions of experience and has only become foregrounded in the last ten years or so as the demand that we ”prove” our disability and entitlement to benefit through showcasing our visible impairments to the scrutiny of untrained assessors and uncaring ‘healthcare professionals’ , or less obvious markers like having been incarcerated under the Mental Health Act, ‘rocking’ during assessments or actually dying from our distress (which is then no fault of the DWP) Why do these folk persist in believing they can fool us they know ‘all about disability’ when all we have to say is, “Ah, really, do you remember when X did that speech” at Disabled People against Cuts rally or, “What did you think of the latest piece on sanctions?” Is it that we don’t do this because we understand that access issues mean many disabled people don’t have this sense of a common shared culture of ideas and that disabled activists (whose conditions range from fibromyalgia to anxiety, to CP and beyond) are a privileged few relatively able still to express the experience of a trap that many sink into but few can articulate. Or is it that it simply never occurs to Joe Public that there is more to life as a disabled person than the actual impairment (not that they know the term ‘impairment’ of course? Ranting about ‘the really disabled’! Oh, please!  How to rally people with CP and anxiety into a mean phalanx of crutches, keyboards and wheel-spinning fury! You can’t claim anxiety is non-condition then try to claim you know all about being disabled because you once had depression”. Pathetic. It all comes from the “we know best because we have run things for you” mentality. It never occurs to them that the majority of disabled and chronically sick and mentally ill and cognitively impaired people agree on one thing – that  the enemy – if there is an enemy – is not other disabled people and the only people fooled by this breaking of disability down into ‘able and unable’ “willing and unwilling” hero and fraud” “really disabled and “merely mentally ill” are non-disabled people. We really seem to be no distance from being treated like kids and taken for fools.

Freeman has labelled recent tribunal rulings on disabilities as “bizarre” which immediately signals where he sits on benefit cuts and disability equality and also a basic lack of understanding of how disabilities can be more complex than they appear at first sight.  The idea that granting support or benefits to people who suffer from anxiety is somehow unreasonable, is quite common in our current Parliamentary omnishambles and in our press but it’s interesting that a former Health Minister and Policy Adviser should follow this line. Does this former policy advisor and self-styled disability expert mean that the only people getting PIP for anxiety should be those in long stay mental health institutions? If so this points to an interest in removing funding for care  from all but those who _are_ in institutional care, when already many thousands of people with profound learning disabilities will miss out on PIP because despite the descriptors relating to cognitive impairment, people with learning disabilities disproportionately lose out because assessors lie about just how little they can manage and refuse PIP to people with Downs Syndrome who can count to five? Or the many thousands of physically disabled people who have lost and will lose their Motability cars or the mobility component of their DLA because they are deemed to be able to ‘mobilise’ a certain distance regardless of how difficult that is ort how unrealistic it is to base an assessment of impairments or daily needs on the ability to walk (or wheel) a short distance.OF COURSE, Mr Freeman. We understand perfectly now. Totally. You and the Prime Minister “totally” understood anxiety when you set up these proposals and cuts to physical and mental health services, and continued with the previous PMs  draconian welfare reforms and punitive assessments. You must be sincere and knowledgeable to have written it all out in a mental health strategy so that we can _see_ how seriously you take it, and you absolutely have a total grasp of how to endear yourselves to the very people you claim to be so expert in! What other group of adults has to endure being told, “We know what is best for ‘these people'”,  what other group of adults or children expects to be so talked over and then to have the wider public agree that of course, if the Government say it is for your own good then it must be so? Well, possibly asylum seekers, and elderly people, but few other groups.

And there’s the problem: your words, your actions, your jargonese and the impact of your policies _upon_ the sick and disabled people you claim to understand so well is language which constantly and consistently demonstrates that you haven’t the faintest idea. We’ve spent a good bit more than five minutes in your company and we probably have a much better idea of how Government impacts disability than Government understands how disability impacts us. A Government that consistently refuses impact assessment and refuses to listen to the voices of opposition MPs, Disabled People’s Organisations, charities, psychologists, doctors, think tanks or committees (unless committed to the ruthless agenda of destroying the Welfare State) must know it all, now. That’s all right then.

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You’re All Right, Am I? Propaganda: Shooting Ourselves in the Statistics.

Born able bods can be funny folk.    Chronically sick people particularly the newly  ex-able bodied person horribly over-estimates the level of benefit fraud. You’d almost think that able bodied people and disabled people have different ways of looking at the world if you didn’t know better 😉  Chronically sick people go though a daily battle of able bodied folk doing the disbelief thing and because something are difficult to fake it is chronically sick people not people with lifelong musculoskeletal conditions who tend to comne in for the brunt of it.  Loads of fraud is a daft idea really: we’ve all seen some prat (like Trump) try to mock a person with a disability and do it really badly but on the other hand having had many years of severe fatigue often with peopple around me not realising I was ready to lie down in the road I can’t say I actually I think I’d pick an invisible or near invisible condition if I wanted to convince people i felt rubbish , fatigue is pretty hard to do convincingly even when youu feel like Rip Van Winkle and I’m writing this having had about one hours sleep for every 24 hours and I can do a pretty good impression of someone who is wide awake so how would you fake it?

Loads of fraud is a daft idea really: we’ve all seen some prat (like Trump) try to mock a person with a disability by doing an impressionm of a specific impairment and do it really badly – I mean I thought the Tango Menace had seen one too many Walt Disney shows on his cable channel and was more Pinocchio paralysis.   Next……   Steve Martin,did a pretty good impression of a bad fake disabled person in  that rather cringeworthy  portrayal of a fake person with a learning disability in Dirty Rotten Scoundrels.  Loads of fraud is a daft idea really: we’ve all seen some prat (like Trump) try to mock a person with a disability and do it really badly and since when would yoour next door neighbour get a pittance per week if he could act his socks off in bad panto with an Actors Equity card?  More to the point, why would you pander to the belief that you aren’t a fraud but one in ten of your fellow spoonies or fellow fibro bods is? Give yourselves a break! I thought I was tough on myself! Would you like it if I said, “Well the people most likely to be faking it aren’t the people with CP, SB and MND so that leaves invisible and varying conditions which is basically what Joe Public thinks, anyway. No, you’d feel crap. But if you believe in 10% fakes – or if you read the Mail 70% fakes logically it isn’t going to be a quadreplegic person is it so you’re really not on a winner here! Have a little faith in your fellow bods Apat from anything else we don’t have that many Oscar winners!

Most people believe the Govt because they didn’t grow up disabled and therefore don’t know much about disability until they become disabled so when Govt started making things up they didn’t know any better. It’s a myth that lots of people were just put on benefits – lots were but a lifetime working in Remploy factories for the first generation not to grow up in care homes meant a whole lot of folk came up for medical retirement in the mid 90s.

If one in 10 was a fraud – or 70% as the Mail would have it – we’d be falling over folk who are REALLY good actors ;-D I don’t know how to explain this a different way to the boring old same old same old but look at it this way I’d think I was being really rude if I said a whole load of people fake chronic illness _ really rude_ because people with disabilities from the start in particular know how tough it is and what the odds of being crocked are – we even discover you can get a double whammy and being disabled can make you ill or give you ME! So where did this idea of a whole load of chronically sick fakes come from and bless ’em why do chronically sick and newly disabled people believe in it? And can we stop, becvause it’s kind of catching which is daft when it’s deffo on my notes that I was cripped from day one and there was sure as someone would ask if you wanted sugar in your tea no benefit to being born disabled in 1977! The sad thing is that when the the Govt says ‘fraud’ they used to really mean folk who were born ‘normal’ because you can’t exactly fake dwarfism or SMA, cerebral palsy or Spinabifida. So really those insulting swine in Govt are saying “WE MEAN YOU, the chronically sick disabled!” Nice.

When out and about I see people stop and have a good look. and then they stop to have a little natter about their taxes or their neighbour who looks OK. If they’re really daft they start to talk about ‘those other people’ to my face because they think it’s some kind of compliment to how crocked I am thaapart from the odd pensioner who has really swallowed the press I’m treated as ‘one of the real ones’ and the worst Joe Blogs is going to say is taht I cost too much and why did’t my parents have me aborted? (Because CP happens after birth and we aren’t quite in Dawkins land yet) They get quite a shock when I start spouting figures and defending folk with CFS and mental illness because it hasn’t struck them I could have both! I’m 39 years old and in all the years I’ve had CP and PIF (often misdiagnosed as ME – hence ending up on this and other ME groups) I have met oworked as a carer and was a thief, an alcoholic, a drug user and a child abuser – she caused me to be nearly raped. If people like that they were on every corner, trust me, I’d notice since their most likely victims are people with disabilities from birth who they see as easy targerts.

0.7% is less than 1% the DWPs own figures which includes their own fraud and error and overpayment of claimants. Also, it’s not 0.7 of disability benefit claimants it is 0.7 across ALL benefits pensions and in work benefits like council tax. Think about it! PENSIONERS point the finger and it is pensions that has teh highest rate of fraud although much of that is professional criminal gangs claiming for non existent people ! If I had a penny for every time over the last twn years we’d explained. It goes to show how effective propaganda is!

If it was endemic a generation of people who grew up with disabilities would know. Sexual abuse is endemic but you won’t see the Govt campaigning against that! 90% of people born disabled can expect to gert abused over their lifetime.
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Bi-ing Me, Be-ing You: Visi BI lity. Blog for Bi Visibility Day 2016

(Note: due to only writing this morning this is the rough draft of the rambling and often medication and brain tumour-muddled brain of a cis bisexual disabled activist who isn’t always too good with words. If I have unintentionally erased anyone, made things sound too binary, confused terms or identities or muddled gender and sexuality while trying to explain anything, please give me a gentle nudge and I’ll be happy to edit accordingly.)

It’s Bisexual Visibility Day in Bisexual Visibility Week.  If you haven’t heard of either of those celebrations of bisexuality yet it’s OK. Exercise is good for the mind. Let the brain cells dance a bit. In particular I want to stretch the grey matter on the problem of people telling bisexuals we are ‘just confused’ or that we ‘don’t know who we are yet’.  If you are unsure why that is rude or what “bisexual erasure” is there are plenty of articles out there. If you haven’t read any of those kind of articles yet go and Google “What Not To Say To Bisexuals” or “How to be a Bisexual Ally”. But if you’ve done all that and you still feel like querying someone’s sexuality based on who you think they may have slept with (or who they have been open enough to tell you they have slept with) for the record, that is  their business and you don’t get a pass to be intrusive, rude, crude or cruel. If you have heard or passed on the rumour taht ‘bisexuals are confused’ or ‘everyone is a bit bisexual’ from a lesbian or a gay man  or a LGBT magazine article they are pulling you into the  game of erasing bisexuality.  

The easiest way to let someone find out who _they_ are is to let them get on with it. If it is no threat to you, or them, or me, I do wonder how so many of yet another generation have turned into their parents and are telling anyone who isn’t their doppelgänger “You don’t know what you want” or “You don’t know who you are yet.”  Telling us we are “confused” is gas-lighting us. At best that’s rude and if you learn to do one thing differently as a friend to a bisexual person, a family member or another member of the Pride umbrella communities, please learn that it’s not OK to tell someone they are confused. It’s NEVER OK. Endless carping , identity questioning by those subjected to the nitpickers and erasure of, “But you went out with a boy/girl/straight person you don’t know who you are yet/you’re confused.” I’m 39 and trust me, I get it from the 60-year-old, the 90-year-old and now people my own age or younger. I’m 39 and STILL being told I don’t know what I want by folk with a shopping list of things they think I ought to be.

Telling people who to be and what to do is a surefire recipe for them never learning what their truth is, because you keep trying to tell them first. If folk say they are bi they are bi. They don’t ‘claim’ to be bi, they are bi.  You need to accept that say, “Hey great and are you good/OK with that?” throw them a damn party and then let them get on with it, checking in if they seem to be at genuine risk of harm. What if after checking ourselves – and search engines if necessary -for sticky-beak syndrome and the unintended consequences of our assumptions, nosiness, invalidation or prejudices, we accept what we are told by anyone over 16 or 21 or whatever the heck we consider a suitable age to send kids to warzones- and BELIEVE THEM until we are told different, at which point we accept that, too? Hey, it means more parties to throw – and most importantly – listen – it’s the respectful thing to do.

Could we all just live and let live and quieten down the ‘what if’? Life can be miserable enough. People who get a kick out of criticism for the sake of it are not fun. There is too much assumption and judgement of other people around. In truth, assault, abuse, ill-health, commitments and stress can all change the way people feel attraction and desire. That does not mean their identity has changed, though others may see them differently. I’m a proud bisexual woman whose potential for attraction is my business and whose identity is not defined by notches on a bedpost, by what you think you see, or by what I wear but I am often read as straight, married, non-sexual, fragile and – frankly in this disablist and body-shaming culture simple-minded and uncertain or ripe for manipulation and abuse.   It seems that even if _I_ know who I am, or my friends do, _others_ see a set of stereotypes and the results are not pretty.  We’ve all heard the variations of stigma on bisexuality: “Confused, greedy, sleeps with men, has threesomes, desperate to sleep with anything, too proud of our sexuality, too unsure of our sexuality. With a flood of poorly thought-out assumptions like that around is it any wonder any minority group is disenchanted and there are so many unhappy individuals out there  and not a few will be confused and distressed about ‘being different’ or treated poorly in a world that gives most attention to heterosexuality and monosexuality as the thing to be.

If we base sexual and romantic identity on who someone thinks about sleeping with aged 16 a lot of different possibilities will come up and some folk will come out as bisexual because thank GOD we no longer have to come out as only heterosexual or monosexual, nor do we all have to identify with the gender assigned to us at birth.  Our teens and twenties are the age most feel most desire and good luck to it! Hormones are rampaging and in a world that is here, queer and here to stay if young (and not so young) people think they might be OR KNOW THEY ARE bisexual, gay, lesbian, transgender, agender, asexual, pansexual, genderfluid, non binary or anything in between then you know they are ALIVE and more importantly, THEY know they are alive.   The miserable alternatives of child abuse, forced marriage, trauma, neglect and domestic abuse are all out there, and very, very real for many of us,  so thank God there are teens who can feel desire before the world comes crashing in before you think that your teen demonstrating a healthy desire for any sex or person of any gender, orientation or sexuality troubles your heart!

Heaven help those of us that has already happened to, and hooray for those with the courage or support to pick up after all that and keep going and a candle for those who didn’t make it. Let folk be shag-happy because somewhere out there are folk who feel abuse has left them with no sexual identity, folk who haven’t found themselves yet and can be abused or patronised for not putting out that same vibe that is condemned where it is seen and folk that society is still too narrow-minded to see as sexual beings or potential sexual partners. Life is actually for living not for criticising.

To my fellow bisexuals: don’t be afraid, to the uncertain about anything whether it is your sense of self as a person in a minority group or your attempts to rebuild yourself after abuse and rejection, you are ‘enough’. You may feel broken but you are human, you may be ill physically and mentally but YOU are not wrong, you have BEEN wronged.  Your  sexual feelings or lack of them, your closeted (or out) sexuality, your orientation, wherever you are now it is yours and it is not worse or less valid for being uncertain unsure or derided by others as something imperfect or unfinished. No true work of art is ever ‘finished’.  If you feel unsure, confused or alone, you are far from alone in that. It’s a messed up world where people band together to be ‘in the group’ for safety. Not fitting is down to a social glitch in human nature that pushes some of us out to the margins of any group while welcoming the loud, the strong or the seemingly confident to the centre.  Don’t be ashamed if you find yourself ‘outside’, even if you are an outsider every time. You have a unique view on what still needs fixing and you’ll never be complaisant. No one ever ‘chose’ to be negative, or depressed, or less happy than those around them no matter what people tell you. Life IS harsh for many people and it is OK to NOT be OK with that, that makes you one of the healers, one of the fixers of broken places.

Be kind to yourself when you can, because ‘positive’ isn’t everything – even batteries have a negative end and even if you are on the losing side AGAIN it is better to have something stolen than to be the thief who takes it away. Society may not accept this but in a deeper sense of values where the hurt is, no one should ever tell us we are less for being the victim of marginalisation, illness, injustice, treachery, or poverty.  Don’t be a people-pleaser if you can help it, because no matter how much you try for the approbation of critical people it will never be enough. You are a bisexual [or whatever you choose to call yourself under the bi umbrella] You do not have to be a chameleon always changing, always trying to blend into your background for safety, unless you choose to be.   your soul will wither trying to be all things to all people and your head will explode like a Boggart trying to be all things to all people . I know this is me saying it, but, enjoy the debate and avoid the embryo gas-lighters and remember to step away and do self-care: don’t drain both ends of the battery at once. Remember to seek support from the bisexual community  and any other communities you identify as a part of but remember you are you, not them, you are made up of YOUR experiences and they are valid. You don’t have to have done, or been or seen the things others have to be you. We don’t have binormativity yet, thank goodness. Let’s make difference a virtue even as we stand together and find community.  Let’s make bi-normative when it comes, inclusivity and acceptance, the ability to let others be who they are and if the phrase ‘binormative spaces’ is ever a reality I hope people will be able to say that what that is the space to find ourselves and be in ourselves as we are in the travelling present.

To our allies: Learn what it means to be a bisexual ally,  read about what not to say, write and speak to people who erase or gaslight or demean us, BE our allies and don’t just say you’ll be there for us.

To lesbian, gay, monosexual, heterosexual and non-bisexual people: if someone makes a perfectly good point and if it isn’t identical to yours what _you_ get is a debate.  What is NOT up for debate is WHO we are and what we call it. There is a B in LGBT and this is what it looks like:  Here, queer and here to stay. Just like you.

 

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