I have this neighbour who receives full disability benefits, gets a free car, a blue badge, and full carer support and there’s NOTHING wrong with them!!!

Okay, I don’t. But sometimes I feel like I’m one of the only people who doesn’t.  The above urban legend has been doing the rounds for a few years now and has created an atmosphere of suspicion surrounding people with disabilities and the care and welfare they receive. It’s one of those things where half of the people who circulate it know someone who knows someone and it’s been used as a justification for the massive cuts which have severely, negatively harmed disabled people.

Once upon a time, when I was more of a dickhead than I am today I used to get angry when people “who were well” were using up disabled bays with what I presumed was their gran’s blue badge. One such time I was sitting in the car waiting for a disabled parking place to free up. This woman, young, great walk, carrying shopping walked up to her car. “Here we go,” I said to my mum, “yet another one.” The woman popped her shopping in the back of the car, climbed onto the driver’s seat, bent down to mess around with something and then placed an oxygen mask over her face. One thing lead to another and we ended up chatting. She had cystic fibrosis. She told me that she frequently received abuse from disabled people who had used the “but you don’t look sick” mentality when judging her. It was a lesson I’ll never forget.

Recently a disabled family member confided in me that she’d been waiting outside of the disabled toilet for ages when a healthy looking guy finally left. This family member is more likely to speak her mind than me, and she stated very loudly that she was fed up with healthy people using the disabled toilets. Having incontinence issues myself it’s something I can understand. More than once I have sat outside of a toilet desperately waiting to use the bathroom because a couple had decided to have risqué sex in it. It is a problem. But this family member learned that applying blanket judgements can be your undoing. The guy turned to her and said, “I was emptying my colostomy bag actually” and with that he patted himself in such a way as to make it clear that the bag was there. Another lesson learned.

Whilst non-disabled people feel able to judge us because of a few piss taking disabled people, it seems we’re falling into the trap of judging others because of the actions of a few piss taking non-disabled people. Regularly I’ve sat there as my dad has decried healthy looking people getting out of their blue badge cars. Meanwhile, at times when I’ve been more mobile than I am now, he’s encouraged me to get a blue badge- something I ended up resisting through fear that I didn’t look sick enough and would ironically become at the receiving end of such abuse myself. One good thing about being a full time wheelchair user now is that this isn’t such a risk.

Joe Public seems to generally forget that not all disabilities are visible. But they also forget that disabilities can be fluctuating and reactive. On Sunday I took my children out for the day. I was in my wheelchair & had to miss parts of the day because they weren’t wheelchair inclusive, and I needed rests anyway. Since Sunday I’ve not attended my college course because I’ve just been too exhausted. My mother in law, who generally isn’t a nice person, said to my husband that she doubted I’m “as sick as [I] say” I am because I went out. Said mother in law also receives full rate DLA  and ESA and is self-admittedly not that unwell, yet she sees no problems with judging my health-despite not seeing me on the day or afterwards. Indeed she hasn’t seen me for 2 years! She also judged me for doing a course for 9 hours per week- a course that has made me very unwell and which I have had to come to agreements with my tutors over because my body isn’t up to the schedule  Though it’s cathartic to moan about my mother in law, the reason I’m telling you this is to highlight the insidiousness of such ideas. Alas people never waste the opportunity to make ableist statements, even on the basis of conflicting facts.

I have good days and bad days. But generally I’m never feeling great. I miss my children. We barely see each other. Every other promise I make to spend time with them I have to break. I want to cycle with them, kick a football with them, and fly a kite! But I can’t. I have a first class degree in history. I also have credits towards an English lit. degree. I’m intelligent and have potential to make a success of myself, except I can’t because my body won’t allow it. My inability to cope with my poor health has seen me forced into psychiatric hospitals and resulted in many suicide attempts. I don’t feel like this is a real life. As such when someone suggests I’m over-playing my illness, or that I don’t look sick etc on the basis that my illness is fluctuating and reactive it is incredibly, indescribably painful. No one would choose this half-life and it’s incredibly insulting to suggest they would. Unfortunately I have spoken to numerous people with disabilities who have stated that the exact same things have happened to them.

This sorry state of affairs means that people with disabilities are subject to bullying by wider society, including other people with disabilities. Hushed gossipy whispers, street harassment, assault, domestic violence, sexual assault and economic exploitation are all disproportionately experienced by people with disabilities. They are also bullied by the state, with economic sanctions, reduced home help, and organisations like ATOS being obstructive and antagonistic, I hope you can see that we’re being continuously victimised. Then there is the fact that physical spaces aren’t designed with disabled people in mind- lack of braille texts, overly stimulating sensory environments, stairs, and lack of wheelchair spaces and so forth are a constant reminder that we’re something other than normal. This has led to a lot of people with disabilities purposefully isolating themselves because the world can be so unaccepting.

I don’t mind people who are genuinely disabled, but it’s all these piss takers. Yeah, I’ve stolen that phrase too, because despite our politicians scare mongering about the idea of fraud in the welfare state the incidence of fraud for disability benefits is actually incredibly low. This is supported by the DWP’s own statistics. The fact is you have to go through medicals, and they consult your doctor, and the parameters for being able to receive those benefits are very small. The assessments don’t take into account that you may be exhausted, brain fogged or being sick. They don’t look at how you feel, they look at what you can do. It’s part and parcel of the capitalist notion that reduces all people to workers. If you can lift something- you’re a worker, and it doesn’t matter if you can’t lift that something x amount of times per week, and it doesn’t matter if lifting that something will exhaust you, hurt you, or do you considerable harm. The whole system is designed to find people fit for work, not to provide people with the support they really need.

I guess I’m just asking people to think before they speak. I’m asking people to understand that you don’t know how someone feels, and you might see them doing something that doesn’t fit your conception of “disability” but you don’t know if they’re hurting, if they’ll be awake all night in pain, or if they’ll be in bed for a week afterwards. You don’t know, and to pretend you do is an insult to all people with disabilities, even the ones you “don’t mean” when you say such damning things. Because whilst you might not mean the disabled friend you’re talking to, the guy at the next table may well do. We live with the constant knowledge that other people think these things of us and it’s incredibly painful and othering. Maybe it’s time to express these ideas less and ponder upon them more? In the words of Falstaff “the better part of valour is discretion.”