They giveth and they taketh away

Monday 19 November, 2018

Hello all, hope you’re all well. It’s been a while since my last blog. But here I am again, to complain about something. As usual.

So, as I blogged previously at some point, a few years ago I bought a kindle. It’s a basic model, 5th Generation, and I believe that it’s the last version to have page turning buttons along the side on them. I bought it on sale at a time when the newer Paperwhite and touch screen versions were out.

That was in 2013, and five years on, my little kindle is getting, erm, sluggish. I don’t think it’s ready for the great recycling centre in the sky just yet, it’s only five years old after all, but I am getting the White Screen of Death sort of frequently, and even though the experimental browswer was put on there and never got further than basic searching, it now doesn’t work at all without crashing the kindle in to a White Screen of Death, making that feature completely unusable.

So I’m preparing myself to get a newer one at some point in the future, and here’s the problem. The newer ones don’t work for me. The Kindle basic 5th generation weighs 169g, and has buttons either side to turn the pages. Newer models are heavier and have no buttons, it’s all touch screen. I hold my kindle with one hand supported by a pillow, I can’t hold heavier models and if I can’t use the hand I’m holding the kindle with to turn the page, it won’t be any use to me at all.

To give a better comparison, even the latest ipad air 2, 32GB weighs 500g.

If and when my kindle does go on me, I really don’t know what I’ll do without it if the other devices are much of the same as we have today. And if goes sooner rather than later, it could even affect my degree. I put my text books on there and the tutorial hand out material too, so I can read along with the rest of the group as they read the paper handouts.  I don’t want to go back to struggling, but the Kindle solved the problems I had with reading, and if I can’t get something as good as it, I’ll be back to struggling.

For those of you who don’t know, I was fed up of struggling so much that I bought a mouse shaped device which had a camera where a rollerball on an old mouse would have been, called The Vision Booster, and the idea is you roll the mouse over the paper and read as you go… and it was terrible. There was a fisheye effect and you couldn’t read the inside margins, but you also couldn’t hover the mouse over the spine because then the words went blurry.

So, I have to know. Am I the only person affected by these changes with technology? Or are we, like the straw issue, the hidden minority who are forced to either adapt or be left out because we’re ignored in the drive for superior technical progress? Am I missing some really obvious solution

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Plastic Straws vs other plastics

Thursday 12 July, 2018

I wrote a post just under a year ago saying that I was worried eco warriors would cause a blanket ban on straws, and so far at that point, there didn’t seem to be a good non-plastic alternative – not for me, and not for many disabled people. Hey, looks like I was right! And this has turned into an ongoing argument that has swept through social media. For everyone disabled person or carer saying why plastic straws are important, able bodied people will swan in and assume they know better, and will bestow their wisdom by making the same suggestions we’ve already point out won’t work, and shape the argument that we’re being stubburn. Disabled people could literally die without plastic straws, we have a right to be stubburn. This is a matter of life and death here, but it’s being reshaped as an inconvenience just because a straw to many people is a luxury.

Anyway, that’s not what i’m here to focus on today. A couple of years ago, whilst I was in Home Bargains, I suddenly became overwhelmed by the choice in shampoos and conditioners, and a member of staff shouted loudly from by the doorways (a good 10 feet away) to ask me if i was okay, because I was on my own, and at first I didn’t realise she was shouting at me. She saw me, sitting there by myself, looking at the variety available on the shelf, and made a show of me by shouting again to ask if someone was with me. For the record, I was fine, I was just looking whilst the person I was with was deciding between the toilet rolls, and she had no right to imply that I needed someone with me and that something was wrong if I didn’t.

It’s not the ableism that’s stuck with me since, it’s the fact that there are so many plastic bottles of shampoos and conditioners, and hand wash and body lotion and all matter of beauty products available on the shelf, in so many shops on the high street, in every town, in every city, all through the UK. How much plastic does that come to?

I was in Lidl this morning – They have a great deal on Wheetabix. 72 Biscuit bars for £3.99, when I was in Farmfoods the other day and they wanted £3.00 for 12! – and I spotted something. They now have a nut pick and mix area, which is exactly how it sounds. You can choose between a variety of nuts and put them in a bag provided. Nothing stops you from taking your own, but they provide a plastic bag like you get in the fruit aisle, and I have to wonder… could they not provide paper bags? I don’t know much about nuts, even though I quite like some of them, but they’re not very protected for freshness in the shop, so does a plastic bag really provide extra freshness that a paper bag wouldn’t once outside it?

Years ago my mum used to buy bars of soap such as Imperial Leather, Dove, Simple and Nivea, and they used to come in cardboard boxes. We then found places like poundland, and Home and Bargains, were selling liquid hand soap cheaper than the bars of soap and because of our tiny bathroom in our tiny house, it worked out better to have liquid soap nicely contained in a container than it did to have a bar of soap melting on the tiny ledge of the tiny sink. Now, because I’m aware of how much plastic I *need* that I can’t compromise on, I’m trying to cut down on things I can compromise on. Like the soap. But can I buy soap in cardboard boxes without the plastic wrapping? No. There’s nice soap caddies I would love to buy and use – unfortunately I still have to deal with a sink with no space for anything nice – but it’s got me thinking, where do you even buy liquid soap that doesn’t come in a 250ml plastic pump bottle? The re-usable caddy would be pointless. Shopping plastic free is difficult, it’s the infrastructure behind it, but it’s not life or death to replace the packaging soap come in, like it is for disabled people suffering through a straw ban.

Someone on twitter made a very decent point a couple of weeks ago. Disabled people need plastic straws to live, and in fact I’ve recently found out that they were invented for the purpose of disabled poeple to use, and disabled people simply wouldn’t be thriving as well today without them, but until someone invented the plastic credit and debit card, everyone was happy without them. They might have served a purpose originally, for security and fraud protection, but they are solely for convenience now. They get dropped, lost, forgotten, stolen, and cut up and put in the bin when they’re done with and replaced every 3 years even when they’re still in a condition to be used. In these days of mobile and internet banking, and paypal and direct transfers, we could easily mix the modern tech of today with the old tech of yesterday, with some innovative ideas to increase protection against fraud and theft, to eliminate credit and debit cards being used and thrown away.

Balloons are literally single use, they serve no real purpose and they end up in the ocean too. And how much plastic is put into our electronics? How much plastic is in the iPhone? Apple have a habit of making phones unusable to force people to upgrade to a newer model long before the tech has actually worn out, how many phones have ended up in landfills before their natural end?

It’s just infuriating me. Convenience for able bodied people is enshrined as “the way things are”,  but convenience for disabled people is too much for the rest of society, and actual life saving neccessities are shaped as conveniences when it comes to disabled poeple. Disabled campaigners are telling eco warriors that they will die without the simple plastic straw, and the response is not to be dramatic, or the fight isn’t against straws, it’s against the single use plastic, and then out come the same 5 suggestions again and again and again. I am tired of explaining that paper straws are no good, sillicone straws are no good, metal straws are no good, biodegradable plastic straws are no good, straw straws are no good. Yes I’ve heard some places do pasta straws, yes many disabled people don’t have carers which yes means they’re alone a large portion of the day. The worst are people patting themselves on the back whilst saying “we all need to make sacrifices”. Again, able bodied people who use them as a luxury is not equivalent to the “sacrifice” of dehydrating or aspirating through a lack of accessible options.

I only need to use straws intermittantly, but as the older I am getting, the more frequent those bouts are. But I am not fighting this for just my own benefit, I am fighting it for others and my friends who depend on them to live.

I will not be convinced that Strawgate is anything more than inflammatory self-congratulatory attempt to look good in the social climate, like a fad. Because until I look around shops and see some sort of dispensory service for shampoo and conditioner to be poured into non-plastic bottles, soaps back in cardboard boxes (or metal tins?), and a real cut down on plastic on the shelves on things that don’t really need plastic, right now it’s just coming across like Marie Antoinette telling the poor people they’re the cause of poverty by eating too much food.


Protected: Please don’t tell me I’m normal

Sunday 24 June, 2018

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I don’t like getting the bus any more

Monday 22 January, 2018

First of all, hello, welcome to 2018. I hope it’s treating you better than 2017 did. For me, it isn’t, but that is something I am dealing with.

Today I want to talk about buses. My parents never had a car, and though I tried learning to drive and even passed the theory test (and that blasted Hazard Perception test), I never got as far as a practical test and getting my dream car. Now I have moments of wishing I had a car, but I have no plans of learning to drive again. So, I have a history with buses. My parents got the bus everywhere, they still do, and so I got the bus everywhere, and well I prefer trains but I still get the bus.

Here’s the problem. I don’t like getting buses anymore, and it’s completely related to being in a wheelchair.

Whenever I could go out, up to the point where I needed my wheelchair full time, I just hopped on the bus. Even on crutches, I hopped on the bus. My friend lived on a different bus route, so I hopped on the bus to one bus stop, got the bus to the bus stop nearest hers, popped in to see her Mum where she worked, and then went to my friend’s. It was brilliant. I thought I could go anywhere by bus, I just had to plan the route!

Where I used to live, the nearest bus to me was less than a 10 minute walk. I lived in a sort of set back cul-de-sac, and two roads away was the main road where the bus was on the corner. The worst part was always having to stand and wait for the bus, and then they brought in the worst most painful bus benches ever, but I still loved getting the bus. Even better, shortly before my Gran died, I got my disabled person’s bus pass that allowed me to travel for free, and she lived in a sort of set back cul de sac on the road opposite the bus stop, which happened to be the next bus stop down from my local bus stop. There was never any issue of me hopping on the bus at my bus stop, and getting off the next bus stop so many yards away outside my Gran’s.

Long journeys, where I was going end to end, I could sit there and listen to music and look out the windows. Short journeys, I tended to know at least one other person on the bus and they always ended up talking to me. Even when I started being a wheelchair user full time, in my manual wheelchair, given the bus drivers could be bothered to lower the ramps down, and even a bus turned up with a ramp in the first place, which let me tell you was hit and miss and on more than one occasion I would have to ring a taxi in a panic when the bus that should have had a ramp in fact turned up with a step with a pole in the middle and a bus driver that didn’t care and I needed to be somewhere in the 15 minutes it would have taken the bus to get me there, it was wonderful to hop on the bus, put my music on, and then get off at the other end. I was independent, I felt free.

The big difference is, the bus drivers who did lower the ramp did so as a  matter of course, I told the driver where I was getting off,  I could get in the wheelchair space nice and easily, the space was sideways so I could see where I was going, and then I rang the bell like any other passenger and then the driver would lower the ramp and i would get off. Like any other passenger.

Now, the freedom buses gave me just 10 years ago, feel like too much hassle for everyone involved Bus drivers have this attitude now – I don’t know if they mean to, but they do, like it’s a very big effort for them to put the ramp out. I can’t see it going down very well if i said my destination was the next bus stop 2 minutes away, like my Gran’s was. The wheelchair space is very difficult to get in to. There’s a bar in the way which means I have to overshoot the space and then reverse into it, the problem is they don’t give enough room to overshoot it, people have to stand up out of their seats to get just a few extra inches, and it’s a very tight fit to reverse and turn into the space. All because of that bar. And then I’m stuck going backwards. I hate going backwards, I can’t see where I’m going. There’s a chance the windows will be obstructed with advert vinyls. I can’t listen to music because these days I follow routes on my map app on my phone and I have to check between the phone and what I can see outside. It’s virtually impossible to go somewhere I’ve never been before in case, like the other day, my app stalls and leaves me clueless as to when the bus stop I need is coming up.

Also, it’s just very unnerving facing everyone else. Especially if something goes wrong with the bus they think is you’re fault – like an electrical failure after the driver’s lowered the bus to let you on – and double especially when you ring that bell. I refuse to ring the bell now. I get my carer to press the one nearest her and then she stands up and sort of blocks people from getting off so I can very obviously turn out of the space and the bus driver will be able to see I’m clearly wanting to get off at the stop he’s just pulled up to.

The bell, which just used to make the same “ding!” noise the other bells did, has had a few changes over the years. First it was a lower toned buzz noise. I didn’t mind that. It signalled it was the wheelchair user who wanted to get off, but it also didn’t alarm the other passengers when they heard a noise they weren’t used to. Then it sort of trilled, which I quite liked the noise of. Some passengers would look up in alarm but see it’s no big deal, it’s just I want to get off the bus. Now it’s an alarm. I mean it actually sounds like a school fire alarm. People look up in panic, and people don’t realise nothing is wrong, it’s just the noise the button makes at the wheelchair space when they want to get off. I’ve seen the stares of people who wonder what the hell I’m playing at, pressing an alarm. I’ve heard someone say “Is that normal? Is she okay?” to their seat neighbour when I’ve pressed that button. People look at me like I’m on fire, and look annoyed at the fact that I’m actually not. I don’t want to bring more attention to myself that I’ve already had from facing everyone’s direction, but I also always want to say “It’s okay! I’m not on fire, it’s just the noise the button nearest me makes! Please write to the bus company so that they change the noise back to the trilling noise, we all liked that one!”.

The ramps used to be shallower as well, or the buses used to be able to kneel more. Now the ramps are very steep, and there’s no traction. I don’t dare get the bus by myself even if i did know where I was going, because i need someone to hold on to my handles as I go down the ramp so that I don’t fall and tip. I get shrugged shoulders when I point out it’s very steep, pointed silences if I ask if they’ve knelt the bus, casual laughs as if it’s perfectly fine to almost fall off the side of the ramp because I’m coming off the bus onto the steep ramp at an angle and can’t straighten out in time, and jokes made at my expense making out that I can’t drive my wheelchair, when really, it’s because my wheelchair is susceptible to skidding, which it wouldn’t if I could meet the ramp head on and the ramp wasn’t that steep. And also, if there was better traction.

And then there’s the time it takes trying to convince parents that they need to vacate the wheelchair space so that the wheelchair user who has a legal right to that space could get on. Which is doubly annoying when there’s two spaces, one buggy and one wheelchair space, but the parent decided to park their buggy in the wheelchair space first anyway. It all used to be so quick and easy, and only the worst drivers refused to let a wheelchair user on, the most untrained drivers who refused to let a wheelchair user on. Now, it’s all of them who treat wheelchair users as if we take too much time to bother with, it’s everyone who would rather leave a wheelchair user out in the cold than do what their own parents did and fold the buggy before getting on in the first place.

It is every single part of getting the bus that has been made harder for wheelchair users, and if it wasn’t for the fact that sometimes, as in quite frequently, it’s the best mode of transport that can get me somewhere, I wouldn’t be using them at all.

And the sad thing is, if wheelchair users were involved in the design of buses, and trains, I doubt these problems would even exist. But we’re not, and things are not retroactively adapted when we point out a problem which really should be obvious at the design stage. When I was in University the first time, just as ramps were becoming slowly the norm, the one bus I could get on, it had a ramp but my wheelchair couldn’t fit down the aisle of the bus to get to the wheelchair space. I had one of the smallest adult wheelchairs you could get, and it was from the NHS so I had little choice in model. Most adult wheelchairs were 2 inches wider than the one I had, but the company’s response to my complaints didn’t change anything.

That was years ago, so I assume that situation improved eventually, but like here, I doubt it improved for long. I don’t know why the world is like this, I don’t know why people are like this, but it’s exhausting to deal with it and fight against it every single day.


Fashion Whilst Disabled

Friday 3 March, 2017

I’ve had this entry in the back of my mind for ages, but I’ve never really been able to put it together coherently. But last week was London Fashion Week and it prompted a twitter thread, and I’ve decided to use that as my basis.

My biggest problem with this issue, is that I’m not really into fashion. I’ve never really cared about what’s in and what isn’t, I don’t follow clothing trends and I think anything beyond function and colour is frivelous. In fact, I am very against the concept of the fashion industry, because almost every time I need new clothes, the exact things that I am looking for are no longer “In style” or “in season”, so they are impossible to buy.  Mixed in to this problem is “vanity sizing”, so not only do the fashion lines that make it into the shop become stock-only sizes where one shape is meant to fit all, the sizes they use don’t even match up to what people were.

Every time I have complained about this, I become very mindful of two fundamental problems: There are not enough disabled people included in the industry, and most disabled people who are involved in the fashion industry are, I’m sorry to say, able to pass for able-bodied. I don’t mean to slight those who are in the industry, but it’s true. They don’t cater for *me*.

Just recently a disabled fashion designer realised that standing mannequins don’t do much to show wheelchair users what clothes would look like on people who sit down, so she designed a wheelchair using mannequin. Unfortunately, all it looks like is a mannequin sitting down. The body is proportional, the body sticks to modern so called beauty standards, there is nothing besides the wheelchair (rather than the mannequin in it) which makes me think that the fashion industry is actually trying to reach out to people like me. I’m short, i’m not thin, my bone structure is awkward, I’m almost always cold, and my joints can swell up a lot on bad day. Size 10 skinny jeans that thin down to a size 8 in the shin, without any space in the seat to sit down in (You know what I’m talking about!) don’t cater for me, and neither do sheer fitted blouses. Guess what’s all I ever see in shops these days?

I am not the only person who is not in proportion, but shopping makes me feel I am. When I wear fitted women’s clothes, my hips are at the part that goes in for the fitted waist (or there abouts-ish). Fitted clothes are not forgiving to my back. Average beauty standards means they go out where I either don’t, or I go in, and vice versa. I’m finding a lot of cuts these days have sleeves stitched quite low on the sides, and I think if the tops fit the body, they would fit the arms on other people, but they don’t fit me. I can’t wear dresses and I can’t wear swimming costumes. I’m currently in dire need of new long sleeved pyjamas and despite wearing a size 10 or 12 since I was 15, recent changes in styles and sizing mean that I can’t find any that fit me. I had fun two years ago when I found a size 10 set where the bottoms were far too tight, but the size 12’s top was so low cut I might as well not have been wearing it. I did not have the baldface cheek to swap them and try and buy them without the till worker noticing.

My complaints about these issues are mainly met with dismissive attitudes and the suggestions that I must be looking in the wrong places, I must be looking at the wrong sizes. The problem can’t really be that bad. Also, that if it really is that bad, my best bet is buy what I can and then get them altered.

It is that bad, and there’s no high street chain that this doesn’t apply to. And why would there be when the problems come from the root? That there is no thought put into the design stage that not all people will fit into them? We see a lot of movement when it comes to “plus size clothing”, we see a lot of shops only selling up to size 14, and the cost sky rocketing when it goes past that, but even then I would say there is a standard that most people will meet for plus size clothing when they are provided, and when those clothes are of good quality. Disabled people are only catered for right now by small independent online companies, usually owned by other disabled people or loved ones of disabled peopel, and almost all based in America. It can be a lot of hassle to face trying to ensure correct size, shape and cut, and it doesn’t do much for the social aspect of shopping. Yet again, disabled people’s problems don’t make it out of the echo chamber.

Give me clothes that cater for humps, twisted backs, shortened trunks, flared ribs, short limbs and wide pelvises. Give me unmistakably disabled people included in the deisgn, in the whole process, and normalise catering fashionable items for people of body shapes outside of the so called norm.


The Undatables: A Failed Journalist’s Opinion

Wednesday 25 January, 2017

(I originally wrote this at some point following a bunch of conversations I was part of over twitter and facebook. Much thanks to Good Pal Lynsey for reading my word-vomit and editing it up for me so it was more coherent. I’ve become aware that sometimes my long winded sentences only make sense to me, and not much to other people!)

**

I’m going to talk about the Undateables. Why? Well, it’s come up again in the disabled community and I’ve had these thoughts floating around for a while, and I thought it was time to put all my thoughts about it in one place.

I think it wouldn’t surprise anyone to hear (or read) that I do not like the show. I don’t like the premise and I don’t like the tone. Yes, I have seen one episode of it, and I’ll never watch it again. No, that’s not because I’m as romantic as a rock (I can be romantic, I just never am. Let’s not go down this road. Anyway…)

The reason why I don’t like the show is because it is a beacon for inspiration porn. What is inspiration porn, you might ask? Well, it’s using the existence or circumstance of a disabled person to inspire able bodied people to feel better about themselves. It comes out in many forms and disabled people see, hear and feel it every day. When someone on the bus congratulates a wheelchair user for getting out and about, that’s inspiration porn. When someone shares a picture of a disabled bride walking down the aisle, that’s inspiration porn. When someone shares a picture of a bride in a wheelchair going down the aisle and the words “good for her!” are the caption, that’s inspiration porn. When a big fuss is made of an able bodied person going to the prom with a disabled person, that’s inspiration porn. When a Paralympian athlete is photographed at a training session and there’s a big caption over the photo saying “If this person can do it, you’ve got no excuse!” that is inspiration porn.

Yes, some disabled people indulge in it, but I’d say the majority of us dislike it and want rid of it. It’s only inspiring because these things are seen as exceptional, but when you come to understand disabilities beyond the “disability binary” then you come to realise that most wheelchair users can get up and walk (a bit, relatively speaking. When I get out of my wheelchair, it’s usually to make it easier to put my coat on or to go to the bathroom with crutches). You also realise that a lot of wheelchair users get on the bus to go about their fairly unexceptional day (when there’s not a sodding pram in the wheelchair space!) and a Paralympian athlete is just like any other athlete. They are fitter and stronger than the average joes of the world. Do people point at Jessica Ennis-Hill, Mo Farah, Gregg Rutherford or Rebecca Addlington and say “If these athletes can do it, you’ve got no excuse!” ? No. Because first of all, people would probably assume you’re implying that black people and female athletes are somehow less capable in the first place than white male athletes, and also implying that having ginger hair impedes a person’s ability to be good at sports. Second of all, because in this enlightened day and age, you know that these able bodied athletes are at the top of their game, because that’s where their training and hard work got them. Disabled athletes train to be athletes all the same. You’ve got “no excuse” regardless of whether Tanni Grey Thompson is doing a marathon or not. We are not a measuring spoon for how capable able bodied should feel about themselves.

So that’s inspiration porn summarised for you.

And that’s what Undateables wreaks of. That show is presented so that people go “Look at all those disabled people, bless em, they want true love, isn’t that sweet?”.

My other problem with it is this “have your cake and eat it too” notion from the makers of the show. Channel 4 have said this show is to highlight disabled issues, and to normalise disability. They say it’s a show for disabled people to connect with, but if you ask on Twitter, most disabled people will reply saying they’ve felt alienated watching the show by the way the editing process and undertone treat the people who go on it.

Normalising disability actually means treating it as if it’s so unexceptional that you take it as just as normal as seeing able bodied people everywhere. We once thought the Spork was amazing, now it’s an everyday item we eat salad with, and new generations wonder what all the fuss was about back in 2003.

Channel 4 are not going to achieve “normalisation” with a whole show dedicated to only disabled people in a dating show, usually being set up on dates with other disabled people, edited to highlight how bizarre and weird (*cough* undateable *cough*) a person’s disability makes them. There’s a thin line between recognising perseverance through adversity, and pointing at the freak of the circus and saying “Dear God what is that thing!”, and I think this show skates firmly past the line into the latter.

I think if Channel 4 really wanted to achieve normality for disabled people, they’d ditch the show and accept more disabled people on to their other dating shows. I believe there’s a show called First Dates, and that that has, on the odd occasion, featured a disabled person looking for love. Now I’ve not watched that show and I don’t know how they treated that person, but I imagine there was less of turning a disabled person into a freak show and more of drink, food and awkward conversation that the rest of the participants also go through.

Keeping disabled people to a speciality show is segregating us from mainstream programming, it is that simple. People will categorise it as a special needs show, and they’ll either not watch it because they don’t want to watch disabled people, or they do watch it because they want to get teary-eyed and warm-hearted over it. It is plain to see who these shows are made for, and it is for the able bodied community. It is a narrative of disabled people skewed so people can lap it up and weep over. And you might ask yourself what the difference is when people do that for the Undateables and when people do that for First Dates. The answer is tone.

Which brings me on to my third point. The show makers keep defending that the name of the show, the “Undateables”, is irony. It’s a nod to the culture that says disabled people aren’t dateable by showing that is an untrue stereotype. As in, they’re not undateable, because they’re on the show to go on date! (YAY~) Skimming over that, I just don’t see them destroying this stereotype via the content of the show. It’s obvious that the subtle irony is lost on most people who watch it.

Look on Twitter, look on Facebook. Read the reactions. It’s The Feels coming from a place of ~Feels~. Because, again, if dating and disability were normalised, I don’t think we’d see as much of a maternalistic reaction as we do now. How do I know that? Because First Dates doesn’t get those same reactions.

And worse is the mockery. There’s a meme that goes around on Facebook and Twitter where people announce that they’ve got through the selection process to appear on The Undateables, with the joke being that of course they’re not “retarded” to go on “that show”. There’s people who live tweet and make horrible comments and jokes about the participants, about the way they look and how they act. There’s people who call other people names of memorable participants. And it doesn’t matter what defence they use, they follow the same formula, and don’t let pathetic reasons tell you otherwise. They’re not calling someone Tourettes Adam* because of a facial feature or personality trait that they admired in the participant who had tourettes, they are using tourettes as an insult towards these other people.

Americans love this defence, it’s called the “But it means something different here and they’re not even disabled”. It doesn’t matter what you say your intentions are, if you are making fun of someone by using an aspect of disability (such as retard, spaz, mong), then you are making fun of disabled people. You are saying that this aspect of disability is bad, it’s something to mock. And the same goes for when people on twitter call their mates “Tourettes Adam*”. They aren’t making fun of JUST their mate, they are making fun of someone with Tourettes.

And for the record, Retard, Cretin, Spaz, Mong, and other such words, were born from use against disabled people. It doesn’t matter if your chair is fire retardant and that that meaning is something different in that context, no one is telling you not to call your couch fire retardant. We are telling you that using the word retard (or the other words) in a context where you are making fun of someone for an aspect you would find in a disabled person, who is less able than you in some way, or not as smart as you academically, then it goes right back to the disability slur. Yes, even if it’s because your friend got a D in their Maths GCSE when you got an A. There is no defence in using these words.

So, back to The Undateables. With all those reasons combined, Channel 4 are not kidding me, nor many other disabled people.

It’s up to you if you keep watching, but I hope after you read this you question why you watch it. I hope you compare it to other dating shows and see the differences that we can see, and think about how each show makes you feel. If you know there’s a difference in how you feel watching it, then you know there’s a difference in how and why they make it.

And I hope you come around to our way of thinking and realise that the show, and the way it makes you feel, is hurting disabled people. It is not helping us, it is definitely not normalising dating and disability, and with that in mind I hope that you eventually stop watching it.

This has been AFJ.

Please come back soon!

*- Tourettes Adam does not exist, as far as I’m aware, however I have seen a similar nickname be thrown around on twitter and I did not feel right about using it.


9/9/2016 – The Anniversary of The Start Of The New Beginning

Friday 9 September, 2016

Hello to the void! I don’t know if I still have any readers about this place but if you are indeed reading this, then I am indeed addressing you.

It’s cliché of me to say, but any perceptions of my demise have been greatly exaggerated. I actually have a half written entry on what’s been happening over the past 8 months that have prevented me from updating on the more regular basis that I was hoping for. And that will still come, but, it’s ironically also been prevented from being written updated by the same factors that have been preventing me from updating.

But anyway!

Today marks a year since my first self-hired Personal Assistant left and I couldn’t let the day go by without acknowledgement. Since I lost this PA (who I hired through a half care agency, half recruitment agency), my endeavour to hire my own PA, with myself completely at the helm, has been nothing short of a nightmare. And to be honest, the events immediately after my PA put her notice in was not all smooth sailing either. From the second I decided to have control who my Personal Assistant would be, it’s been one bad experience after another.

When my PA put her notice in and subsequently left rather suddenly – she actually put her notice in with intent to work her two weeks but because of bad health had to finish her notice on sick leave – my time frame to get a new PA went from two weeks to 0 days. She texted me first thing on the Wednesday morning, but the office didn’t even ring to tell me until 3 in the afternoon, 3 hours before I was due to have a shower call. They were meant to call me back to discuss it further, and they didn’t call me back. In fact I rung them back at half 4, done with waiting, only to be told “We finish at five, and it’s half four now….”. I was told I would have to wait until the next morning.

There was just no urgency of the matter, no sense of duty of care to help me hire someone to replace the person they suggested I hire due to her being on the books already, with very little hours. I was subsequently passed from pillar to post, I did not speak to the same person twice. I spoke to one person, they tried to offer me spare cover of whoever was available with no guarantee of consistency. I emphatically turned that offer down, I was told they would have to speak to their manager and call me back. They did actually call me back but only to offer me cover again. It was like I’d entered the twilight zone.

Then, they, unbeknownst to me, moved offices on the Tuesday. I was meant to be rung back on the Monday, and I wasn’t, so when I rung them on Tuesday morning and was met with a dead phone line, you can imagine what I was imagining! I was up the disability creek without a PA to paddle. When I eventually did get through to someone, I was told the person I’d spoken to previously had left her position (second time I’d heard that), and someone else would be put in charge of the situation, but I wouldn’t hear back from them until the end of the week at the earliest, because they were moving offices.

If I got one thing from all of these phone calls, it was that it was just an unfortunate circumstance that I would be left without care, but they were just really busy over there with their moving offices and changing job positions.

I think what happened after that really sums up my experience with Your Life, Your Way best though. After my final phone call with someone on the morning of 15th of September, 2015, I wrote a very thorough complaint letter to the managing director of the company and told them I’d decided, following that phone call, that I no longer wanted their so called services.

I was called up two days later by a member of staff trying to set me up with cover. My complaint had not only not been shared to other members of staff, it hadn’t even been read yet.

10 days after I sent my complaint, the managing director of the company emailed me back, first to apologise for my poor experience with the company, but then ended her email by stating I’d contacted her office since my email asking her to get in contact with me because I wanted to interview people, not just have cover sent to my house.

Does that message sound familiar?

After that, I decided to go at it fully on my own. I’ve talked about this before. I put up adverts, I booked a room to interview people in, I arranged interviews, people confirmed, and then came the day. I went ready and prepared, I had my best friend and my mum with me. They were going to be the Karen Brady and Nick Hewer to my Alan Sugar.

Nobody turned up.

The next set of interviews I organised, 3 out of 5 people turned up. I gave someone the latest slot I could give them because they asked for a later slot due to prior engagements, and they didn’t turn up. Following that, I had someone leave verbal abuse on my phone to someone called John. They never left their number but I recognised their voice from an applicant who never turned up.

Out of the three people who did turn up, though, I hired one person. I thought she was just perfect for the job, and I think for the first 6 weeks she was. And then something changed. I don’t know what brought it on exactly, but the first incident was her turning up late with no real explanation. Then it was a last minute cancellation where it was like a chain of knock on effects, her mum got called into work so couldn’t look after my PA’s son, so my PA requested to change days. These things happen but as someone with no priorities, I always feel like I can’t say no without sounding unreasonable. But the fact of the matter is, I choose these times and calls because they are the best time and days for me. And then I’d say the death knell was her getting another job for more money, which I understand was necessary for her, but it killed off any availability for me. I was then hurt in an accident which meant I had to rearrange calls, which was difficult because of the aforementioned lack of availability. Further late arrivals, and just had something changed in her attitude whilst she was here. I knew I had to speak to her, and her probation period was ending so the next call I had, I was going to sit her down and talk to her.

Before I even got to really play the role of the boss, she said, amicably and quite friendly, that she would have to put in her notice in, because her other job could offer her more hours, and she wouldn’t have the travel costs and it would just generally work out better. It’s understandable, and I suppose it saved me the job of having to ask her if this was a job she really wanted to keep.

The thing that sort of annoyed me on that, though, is that in the interviews I always ask how the applicants intend to travel to mine. I point out, if they take public transport, that Sundays have different time tables that might mean they can’t work Sundays after all. And around that 6 week mark, my PA started getting taxis home from my house because there was no bus home. The way it worked out she was spending her Sunday hourly wage on her taxi fair, and I look back and wonder if she resented me for it, for maybe not offering to pay for her fair for her.

Since then I have set up four more interview days in the interview room, usually arranging to interview 5 or 6 people a day, and many people have been unsuitable or just not turned up. It’s like I said last time, people were applying without reading the advert. I heard more than once that they thought they were applying for a full time job, and I just don’t know how because the advert specified, at that point, 6 hours a week, with the hours broken down into time and days of the calls.

I found two people I was happy with, and it was a hard choice between them. I have sadly regretted my wrong choice ever since. I went for listed experience over everything else, and I selected someone for a second interview – I was doing this slowly this time and not the rushed pace the social suggested. They came to my house and we chatted. I felt like we got on like a house on fire, so I  told her to think about it for a week, and to get in touch if they had more questions. A week later they came to my house to sign the employment contract. I had to print off so many things for the social to confirm I’d hired someone. I gave her a start date.

She didn’t turn up. I texted, I called, and nothing. I can’t tell you how excited i was to finally get a shower after 6 months. I was left disappointed, and confused. What had gone wrong!?

I eventually shook it off and decided to shake things up a bit, due to lack of all around availability, and I did phone interviews. It was a bit different. I couldn’t get a real picture of some of the people I interviewed and could only go on answers alone. But I found two people yet again I was happy with. I was planning to have further interviews, this time face to face at my house, much like with the last potential PA, to go through further details of the job and see if it was something they really wanted.

I called up one and arranged the details. I called up the other and…. Nothing.

Day of the second interview came for the applicant…. And they didn’t turn up either. To say I was disheartened would be putting it lightly.

It’s been 8 and a half months since my last PA left and seeing as I depend on my mum, who is disabled herself, this situation passed miserable and unbearable four months ago. Except for twice, I have only left the house with friends or for medical appointments, and those two times were quick short trips where I struggled to manage independently, but had to go out because I could not stand being indoors whilst it was gorgeous and sunny outside anymore.

There is no care agency – apart from the care agency I ditched for being unreliable, and I refuse to go back to them – in my area who will take a young disabled person unless they have either a mental health problem, a learning disability or a neurological condition. And I have none of those things. I have some sort of physical bone disorder that is something like osteoarthritis. I have to hire someone, and there’s some more applicants lined up to interview, but I am fed up going through it all – spending time and energy separating the wheat from the chaff, only to be disappointed at the end of the process.

It’s been a year since the last choice blew up in my face, how much longer will this reign of bad luck last?