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.

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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?


Interview Etiquette: The Care Edition

Wednesday 17 February, 2016

I’m one of the many disenfranchised disabled people who’ve been left with no option but to employ a personal assistant/support worker directly through direct payments, because the care companies are not good enough or sticking to the high quality of care, including consistency, that they promise to their “clients”. The company I left the first one for was such a shambolic affair that I would suggest they change their name from “Your Life, Your Way”, to “Your Life, Every Way But Your Way, And Good Luck Hearing Back From Us Within A Week Even When It’s Urgent”. I would even organise a whip around to help pay for the name change costs.

It’s not easy going fully independent. There is paperwork, there is tax, there is insurance. There is the ever looming fact that it’s all on you if something goes wrong (Holy responsibilities, batman!), and if you’re not a confrontational person, you might find yourself wanting to dig a hole under your bed and hiding there if an issue does come up. But I was left with no choice, and I find myself, for the second time in less than 6 months, on a search for someone to employ.

I understand how the job centre works. I know because at a point in history I was subjected to Remploy’s practices, and currently have relatives under the power of Ian Duncan Smith’s misery-inducing regime. Advisers tell you to apply for all jobs, every job, or you will be sanctioned, so help you God. They tell you to ignore the stipulation for driver’s licences, levels of experience wanted, specified genders wanted, qualifications required, and sometimes they demand you apply for places you know can’t cater for your disability, all under the threat of Sanctions for non-compliance. I do understand all of that, and the job centre have to understand that it’s affecting employers as well, but alas, they don’t care in any direction.

But I do. And I, an honest understanding person, want people to be more honest and up front with independent, private household employers looking for Personal Assistant/Support Workers/Carers. I think I speak for a lot of people when I say it’s better for us to know right from the off rather than go through the motions of believing you want the job just as much as we want applicants. I’ve now had two lots of experience trying to find someone. The first time, I can’t remember how many people applied overall in the end, but on the first day of interviews, nobody turned up. Myself, my mum (of ill health herself) and my friend were in a little office for a good portion of the day, waiting for all the people who had confirmed their interview slots to turn up, and none of them turned up. The second interview day, out of 6 people who had confirmed, only 3 people turned up. I was lucky that amongst those 3, there was one great applicant worth hiring. But, over all, I was disappointed with the process on many levels. This second time, I had 9 people apply and confirm for interviews spread over two days, and only one person turned up.

So, I’m going to give people a list of What To Do/What Not To Do when you’re looking at adverts for a care job, based on experience I had with Applicants.

1) Either turn up or cancel. Don’t just not turn up, it’s rude. It waste’s people’s time and it kills any chance for a last minute offering to another person who might take the interview slot.

2) If you know you no longer want the job, even within 24 hours of the interview, let the employer know so that, again, they can try and offer the slot to someone else.

3) If you don’t actually want the job, because you’ve been made to apply for it, say so.

One applicant confirmed their slot but then needed a different time. It wasn’t possible on that first day, but I said I’d get back to them about the second interview day when I knew the time and date for it. I emailed them with the new details, and I heard nothing back. Just to double check, I gave them a call a few days later and asked if they were still interested in the job. They said they were. I said that I’d emailed them with another interview offer but heard nothing back. They said that they’d been so busy, they hadn’t had time to check their emails. I understood, because that’s happened to me too. They said yes to the time of the interview, they thanked me for calling them and letting them know about another slot, and they looked forward to meeting me.

They didn’t turn up.

4) Read the advert carefully. Also, consider what’s in the advert as well as what might be between the lines. Ask yourself if all elements are something you would be able to do. Think of the real demands of care, it’s not all shopping trips and making cups of tea.

Universal Jobmatch has a personal details safeguarding system where someone will ring you up to change the wording of your advert if you’ve put too many personal details or you’ve used exclusionary terms in your advert – They have restrictions on specifications, due to equality laws. I am not allowed to discriminate on any basis whatsoever. There are exemptions – i’m allowed to specify female carer – but there’s not many other exemptions allowed.

Sometimes the full role, the full expectations, even the times the job takes place aren’t allowed to be included, because of vulnerable adult safeguarding. And with UJ, I don’t think there’s a system that allows you to ask for more details. You, as a Jobseeker just apply and hope for an interview. Maybe you could use the email or the phone call from the potential employer to ask for more details, before an interview is confirmed and you find out there that the job is not something you can do, for whatever reason.

I’m talking about two experiences I had, and I’m trying not to get too specific, in order to save any potential hurt feelings. But basically, one experience was that I had at least two people misunderstood the advert, or misread the advert. My advert spoke about helping me, an individual disabled young adult, but both of these people assumed they’d be working as part of a team and caring for the elderly.

The other experience is that, although I’m not allowed to discriminate, people with their own mobility problems also applied and it was clear they didn’t realise how physically demanding a job it can be. I don’t need lifting and handling, but there is walking on their part, manual wheelchair pushing, steep slopes, a lot of standing up, and probably other micro-necessities that I can’t think of right now, that you really only notice when you can’t do them. I’m talking from experience of being on the other side. It’s one thing to ask someone to pass you something, it’s another thing to reach up, grip an item, hold and carry the item, pass it over… and then do that all again in reverse when they’ve read the ingredients on the back and realised they’re allergic to it.

For the most part, the lack of disabled people in work places, in various industries, lifestyles, is a lack of effort by the employers. But physically assisting a fellow physically disabled person is not one of those jobs that can really be catered for, and that is something I learnt years ago in my more mobile days, from assisting my friends less physically mobile than myself, to the detriment of my own health. It takes compromise for that to work, for both people to be happy, and quite frankly, to me it’s a compromise enough employing people to depend on. I had just had a PA from YLYW who had her own disability, and though we muddled on, it made planning things difficult. Can we get to this train station in time to get to this place or home in time? Will she be able to carry this today? If the weather’s bad, where will we go, because she can’t push manual wheelchairs up steep slopes and my electric wheelchair doesn’t do bad weather?

Selfish as it may sound, when you only have a guaranteed four hours a week to leave the house, you want to make the most of them, and you need to be sure the person with you is 100% up to the job. I’m not able to offer trial shifts, I have to go with my feelings during the interview.

6) Ask yourself if a permanent, long term care job is something you really want to go for when you know you’ll be leaving in less than a year.

This is a job with a three month probation period to work out kinks in the system and talk through any prospective problems that may pop up. It’s a job where you get to know each other, you get used to each other, and though you might not be friends (Mostly not recommended, though on one occasion it has worked out wonderfully, and not to get too sappy here, but she has kept my spirits up during this whole debacle), you will become a significant part of your employer’s life. You might leave your job at the doorway, but an employer in this capacity is a disabled person who will depend on your consistency, care, empathy and professionalism. Availability is a commodity worth it’s weight in gold, yet we all know the pay is pennies thanks to the government.

It’s understandable that you have better plans for the future, but your employer might need to depend on people for the rest of their life, and people coming in and out of their life every 6 months can be upsetting and unsettling. This isn’t a holiday job. If you’re after a temporary job, go for a temporary job or an agency job, because god knows nobody expects consistency with agencies. If not for nothing else, think of how big a pain in the arse it is to go through finding a new PA, and dealing with the lack of care package facilitated in the interim, every 6 months when their employee leaves cos the better job they had lined up, because of uni, because of whatever comes up.

7) Follow what the advert asks of you. If the advert asks for CV, apply with a CV. You’re not going to impress anyone with a request for an interview if you’ve ignored what the advert asks of you. Especially when it’s a job where you’ll be doing a lot of what the employer asks of you. You’ve basically failed test number 1.

I’ve had a few applicants say that they don’t know how to send a CV. And whilst that’s something I can believe, because not everyone is computer literate, there is an “Upload file” button right above the message block with the extra information of “Use this to send your CV”. If you really can’t upload your CV for whatever reason, you need to offer an alternative. Copy and paste it into the body of the message, or link to another site which does host your CV.

Just evading the request won’t get you anywhere with anyone who is trying to protect themselves from bad applicants, you’ve made yourself look questionable and you’ve caused yourself to blacklisted.

People wonder how so much negligence happens in care homes and care companies, and it’s because people aren’t properly vetted. Private, independent employers like me can’t do much, but faith in a CV and follow up references are one way. I think some people scoff at my over-professional tone and my fastidious nature when I go into Employer mode, but I’m not just going to give the job to someone who sends me a message in text talk promising me they’ve got the experience. Where’s the proof? It’s my health and safety in your hands, here. Give me something I can work with.

8) Ask questions and be honest. One bad piece of advice I was given before the first round of interviews was to tell the applicants what I wanted from them, under the misguided belief that if the applicant doesn’t feel up to the job, they will say so there and then and maybe end the interview early. It didn’t work, they all smiled and nodded. I could tell they just told me what I wanted to hear, what they thought would get them the job.

Think this through. You’ve just been told that hours could change, with advance notice but still, calls could be cancelled at short notice, and that you will have to call in sick if you have so much as a cold and risk losing your pay. You’ve also just been told that part of your job will be to play bodyguard when an angry parent with a buggy wants to fight to the death for the wheelchair space, but understandably your potential employer won’t let up and sit by the doors because it’s a Wheelchair space. At what point do you want to have the conversation where you say you don’t think this job’s for you after all? In the interview where it dawns on you, or, say, afterwards when they hire you? After your first week? First month? After your pay is less than it should be because you had to call in sick to save your employer from catching it and suffering from it worse?

Private, independent employers looking for PAs aren’t going to go back to the jobcentre and complain about you. Not if you actually turn up. We’re too busy trying to seift through the unsuitable applicants that we’d much rather complain about (Female applicants only means Female Applicants Only, Local area means anything north of Southport is a ridiculous distance for you to be travelling) and deal with finding new applicants when the people we had hopes for didn’t turn up. Also, I think we’re all far too decent and understanding for it. We’re suffering under the same heartless bunch of scumbags. As you’re being forced to adhere to a heartless regime, we’re having our benefits and carepackages skimmed to the minimum and waiting to be forced under the same regime ourselves.

My last piece of advice is possibly the absolute most important one. You might like to write this one down so you remember it forever.

9) Do not get your potential employer’s phone number mixed up with your ex’s, and subsequently, absolutely do not leave threatening messages on their answering machines believing you’re leaving them for your ex. Best to just not leave threatening messages to anyone at all, really.

Admittedly I can’t prove it was them because they blocked their number, but I’m a big believer in Occam’s Razor, and I’ve got great voice recognition skills.


A Failed Book Review: Handle With Care

Tuesday 12 January, 2016

Content Warning: This review mentions and in some cases goes into depth about eating disorders, self harm and rape. If these topics are upsetting or triggering to you, please stop here and either navigate to another post by the links on the right hand side, or exit the blog via your back button. A new post will be up in 2 week’s time and will replace this post as being the first to read should you wish to return.

Thank you very much and apologies for any inconvenience. If you’d like to contact me for any reason, please use the comments on this page to do so.

 

Handle With Care.

Handle with Care was published in 2009 and was written by the famous My Sister’s Keeper Author, Jodi Picoult. This novel, Handle with Care, is hard to describe and it’s only today that I realised why. This novel is meant to be about the difficult life of a young girl, called Willow, who was born with Osteogenesis Imperfecta Type 3 (Brittle Bones Disease), and how her parents are coping with having a disabled daughter (her sister: a disabled, younger sister). What this story is, like what any other story is when it concerns a disabled person, is more about how everyone around this disabled character deals with the disabled person’s existence (in this case Willow), and how their existence impacts on their own lives. This book is not so much about Willow, but those characters in the peripheral of Willow’s life. She is, arguably, both the main character and the most minor character in the book.

The main character, I would say, is her Mother, Charlotte, who tries to show that she cares the most about Willow, by suing the Ob/Gyn for wrongful birth.

And here’s some context as to why I read this book:

I hadn’t read Jodi Picoult before and I didn’t know all that much about My Sister’s Keeper. I knew the film was “a weepy”, and I tend to avoid those, so I didn’t know it was a book nor did I know the author’s name. But this book, Handle with Care, was recommended to me by my the mum of my friend, Laura.

My friend Laura, for those who don’t know, had Osteogenesis Imperfecta Type 3. Actually, according to her specialist, she had one of the most severest cases of it he’d ever seen. Unfortunately, after a serious bout of sickness related to her condition, she passed away back in October 2005, aged 20. It was with personal interest in mind that her Mum read the book, and then recommended it to me some years later. In her words, “Just so much of it’s like Laura”.

So, with high expectations but the understanding that any knowledge I had of OI, and the treatment of it, was second hand and might very well be outdated by now, I started reading. And for a good two thirds of it, I couldn’t put it down.
The story itself is pretty easy to follow, despite story switching POV between multiple characters, and random recipes and misplaced narrative throughout the book. Charlotte had her first daughter Amelia, then she married Sean O’Keefe and had her second daughter, Willow. Charlotte was best friends with Ob/Gyn Piper Reese, who became her and Sean’s go to doctor when they had trouble conceiving, and when their friendship somehow survived through all of that awkwardness and then some, she took on the natal care of Charlotte.

By the time Willow is five, which is when the novel really starts, where the real introduction to Willow happens, the O’keefe’s have mounting medical bills, money problems, a frustrated pre-teen daughter, and a super intelligent, intuitive younger disabled daughter who is being held back by her mobility problems and America’s general lack of understanding of severe disability.

I’m going to take this moment to say that I didn’t realise wheelchair services were so bad in America. Unless Picoult has used some artistic licence, I didn’t know that children had to wait so long between fittings for a suitable wheelchair. We’re not much better in the UK, especially now in the age of the post code lottery, but at least the wheelchairs are free, they tend to try and get things right, they’ve always provided children with chairs you can sort of adjust around their growth, and charities do always help where they can. Leaving a child of five to sit uncomfortable in a chair they got fitted in when they were a toddler, especially if it can be dangerous to their health and safety, would have been unheard of (until about 2010, when the wheelchair services all had their fundings cut. But that’s a post for another day!)

Back to the Book. This is when it starts to get a bit complicated, but I’m going to try and simplify it as much as possible. The O’keefe’s go to Disneyworld and Willow suffers from a bad fall (as is the unfortunate nature of Brittle Bones Disease) and both her thigh bones end up broken. The doctors at the local hospital check it over, but because the medical letter that explains Willow’s condition was accidentally left at home, they mis-read all of Willow’s breaks as abuse, and both Sean and Charlotte end up being arrested. Amelia ends up in guardian home for the night, under child protective custody, and poor Willow ends up in hospital, alone, in a spica cast.

Curiosity drove me forward in reading, but even at this early stage I was sitting there wondering how realistic this would be.

Knowledgewise, I was questioning whether it would be really possible for a child with OI type 3 to be put in a spica cast. I was put in a Spica cast following corrective surgeries on my legs when I was five, they’re not the easiest things to live with; And Laura couldn’t have any casts of any type put on her, ever, because they were more of a danger to her than helpful. They were so heavy, they would have caused breaks either side of the cast. And, a Spica cast can go almost all the way up to the chest, just one bump or wrong turn could have meant the spica cast digging the wrong way into a rib. I was left wondering if maybe things had progressed so much that this wasn’t actually a fatal risk anymore. I welcome comments to inform me either way!

Similarly, besides the bouts in her wheelchair, Willow could walk. If medical treatment and medication has come on leaps and bounds since Laura was a child, I’m happy to hear it, but you hardly ever heard of someone with OI Type 3 walking, even into the late 90s. I’m aware a friend of Laura’s could walk with crutchers, but he was a lot bigger than she was so I don’t think he had type 3. What many people with OI decide to do, is to have steel rods inserted into their long bones, so that their legs can bare weight. That was never an option for Laura, her bones wouldn’t have accepted the rods.

And talking of size… It has happened that the less severe forms of OI has been misdiagnosed as severe abuse, and probably does continue to happen. Because you’re looking at someone just a bit outside of the averages of height, weight, proportions and mobility. But with OI type 3, the person is very small. They have certain, unmistakable attributes to their physical appearance. I can understand these factors being overlooked twenty-five years ago, especially in a very young child up to toddler age, but it wouldn’t have taken them more than two seconds to see Willow’s body differed from that of an average child: Her body being a certain shape, the length of legs and arms not being in proportion to her torso or head, the whites of her eyes possibly being a blue-tinted colour, and a voice at a higher pitch than normal you’d find even on an able bodied child. With some conditions, you might not know what it is you’re being faced with, but you certainly know that, skeletally speaking, you’re looking at someone atypical. A child, yes, but an atypical child in physical appearance. Abuse wouldn’t explain low levels bone density or unusual calcium markers in the blood, and I would expect doctors, especially within the last decade, to check into these things before throwing the A word around.

It was one of many occurrences I found that Picoult depended on the sheer ignorance characters and readers alike to carry the plot along. (But hey, how else would the story drive forwards?)

Anyway, in the plot, once everything is sorted out and everyone’s released and free to go home, that leads to the O’keefes trying to sue  everyone involved in the events that lead to the mistreatment of the family. The lawyer says that’s a no go, but they should consider sueing the Ob/Gyn for wrongful birth. That is to say, sue the doctor overseeing Charlotte’s pregnancy for not figuring out that Willow had OI in time to give Charlotte the option to abort.

In other more specific words, blame and sue Piper for not giving her the option to abort Willow. Despite the fact that they’re catholics, abortion was never going to be an option as agreed by both Sean and Charlotte, and a late term abortion was in fact offered to and subsequently turned down by Charlotte.

Amelia develops bulimia, the sisterly relationship between the two daughters breaks even further, and eventually Charlotte’s drive to carry through with her plan causes a rift in her and Sean’s marriage.

 

It’s a very full on story, and the further long I read, the less sympathy I had for Charlotte. She didn’t see what she was doing to her family. Or she did, but she didn’t care. There was one bit where, because Piper’s husband is the small town Dentist, Amelia misses her appointments, because Charlotte refuses to take her, even though she was due to have her braces removed. That’s just cruel.

Willow was intelligent enough to pick up on what was going on, and there’s just no nice way to say “if I’d have aborted you, we wouldn’t be in so much debt” to a young child. There’s also no nice way to say “I do love you, but I didn’t ask for this and someone has to take the blame for that.”

Then there was the convention. Charlotte is confronted by a bunch of mothers who read about the court case in the news. Charlotte is actually angry for being confronted. Charlotte really doesn’t understand how lucky she has it, in comparison to other people. Meanwhile, Amelia’s wandering around the hotel the convention’s held in, pretending to have a lesser form of OI, and she picks up a boyfriend along the way.

Those are the parts I’d say that were written well, even if on the surface I didn’t particularly enjoy the plot. However, intermixed with these parts were really poor writing and plot devices that made me think Picoult’s editor had set a holiday response for their email saying “Whatever you’ve written, I’m sure it’s perfect! We’ll publish it in when I’m back!”

We’ve got the part where, following the removal of Spica Cast, Willow needs to exercise. How does an over protective mother encourage her reception aged daughter, who has a condition where just one fall can kill her, to exercise? She makes her to walk the end of the driveway, by herself, to collect the post (admittedly something she likes doing but still…) where any dubious adult could just come along, sweep her up and run off with her. The route to the mail box at the end of the driveway involves going past a pond that Willow has an attachment to, and not the adult logic of risk assessment. Between any of these points, she could fall and die, if not be abducted by the aforementioned dubious adult.

Holy Brain Fart, Batman!

(I later realised this was a Chekov’s Gun situation, but I’ll get back to that later.)

At one point Sean and Charlotte talk about Willow’s future, and I cringed at the ignorance. It’s very realistic for parents to suddenly realise what the future holds for a disabled offspring, but it’s very undermining to the plot when you have a character (in this case Sean) who are portraying themselves as masters of their daughter’s care, victims in the eyes of the law, prepared to do all that is needed to make sure their daughter’s life is lived as equally as possible… being disparaging about any aids she may need in the future. If it’s meant to add depth to the character, it doesn’t. It wreaks of short sightedness and narrowmindedness.

Then we’ve got the “let’s throw this in/blink if you miss it” rape. Yeah. Rape. Sean and Charlotte have a break in their relationship, and then from the point of view of Sean, they have awful sex that Charlotte didn’t want, where Sean’s main goal is making her hurt as much as her actions have hurt him. Deliberate hurtful sex without enthusiastic consent? That sounds like rape to me.

Then there’s the part where Willow selfs harms because she’s seen Amelia do it to herself. I’d say that this was the point where it felt like Picoult was dragging it passed the point where she should have ended the book. This didn’t just feel like a red herring, it felt tired. It felt like a way to allow the author to point to the book and say “No, see! It really IS about Willow!”, instead of having Willow be this sort of phantom main character that the story is meant to be about, but really isn’t.

There is also a conversation after Willow is hospitalised for self harming between Piper and Sean, because Piper is the only reasonable person in this book. She (rightfully) suspects that Amelia is self harming and suffering from bulimia, and thinks (knows) that’s where Willow “learnt” how to hurt herself. What does Charlotte do when Sean mentions that his information come from Piper? She has a go at him for talking to Piper, talking to the “enemy”. She’s got one daughter in the hospital, and another daughter suffering from serious emotional distress that has manifested into self harm and an eating disorder. But all she cares about is the case.

There’s the whole side plot involving the lawyer, Marin, who doesn’t like the case, because she was an unwanted child herself. I’m not sure what she really added to the story, but things got very contrived when one of the jurors turned out to be her birth mother. What are the actual chances?!

And then, the main big problem I had with the book. The ending.

Willow, once again, is a child who could die from a sneeze (No exaggeration, sneezes can break ribs, ribs can pierce lungs), and yet she is allowed to go outside, by herself, to look for Amelia. It’s cold, slippery winter weather. There’s that pond that she can’t resist going near, which her mother knows. And Yet! The over protective parent allows her to go, by herself, despite ALL of these dangers. Despite the long arsed court case that she’d just won, by saying how much she looks after her severely disabled daughter.

And what happens? Willow goes to the pond, the ice breaks suddenly, and she falls through into the freezing cold water and dies.

The epilogue involves a brief update on everyone. Sean and Charlotte are back together, Amelia’s in therapy, Charlotte placed the cheque she got from winning the case in the coffin with Willow, and Piper moves away and is never heard of again.

I was left so disappointed by the whole ending. Not because of the understandable “After all that!?” feeling I was left with, but because… I suppose, because there were more realistic ways for a person with OI to die, and Picoult chose that one!?

I went from wondering whether a child with OI Type 3 these days could actually walk, to wondering what sort of brain fart do you have to have to let your child, who could fall and die by slipping on ice (as any child could, but this is more so), go out by herself in icy weather?! You can only consider it in character because of the same brain fart earlier on, (Chekov’s brain fart alert!) and although it must have been planned out due to the previous incident of letting Willow out to the end of the drive and going missing by the pond, it just reads as a quick solution to bring about the end of the story.

There are natural complications with OI that a person can die of.

There are the usual risks anyone has in daily life where the risk of dying is increased due to the nature of the condition. For example, one day, Laura, aged 4 or abouts, was spinning happily around in a circle, in her wheelchair, and Almost cracked her head on the edge of a piano. She didn’t, luckily, but the point is, it could have happened and the outcome would have been devastating. An able-bodied child would probably just give themselves a concussion.

It feels, for the lack of a better word, disrespectful.

And then Piper… Piper just moves away!? I think that was another point of contention for me. It was written in a half unbiased, half sympathetic style directed at Charlotte, as if we should all see it her way. It was all very pragmatic towards Piper, a sort of “Well, what can you do? Someone has to answer for this child being disabled” attitude about it. There wasn’t much sympathy at all for a woman who not only did not cause Willow’s disability, by action or inaction, but also did everything right by the whole family, and still had her career ruined for it.

I’ve missed a lot of out, half because I can’t remember it, and half because I couldn’t be bothered going into those bits. There is so much to this story, from so many different points of views, it’s just difficult to go over.

I’ll give credit where credit’s due (although again, I wonder if this was from lack of research on Picoult’s part and not really through a deep understanding of disability), there was one good thing that came through over all. Many people don’t understand that disability can be a spectrum, and that mobility can and does change from day to day for many people. Sometimes there is a conscious choice involved over what “part” of your disability you have to consider most important, and allow the rest of yourself to suffer the fall out. For example, having to walk because a problem with your upper body doesn’t allow you to self propel, and then dealing with the pain in your legs from walking, which is the lesser of two evils in this scenario.

In this book, there is an understanding that when Willow’s health is best, she can walk and only needs her wheelchair for safety and speed. She also has a walker and other aids for bad days and an array of things for the worst days. Many people think that if you’re a wheelchair user, that’s it, you can’t walk. Nobody says to Willow’s parents, “Well, she could walk yesterday”, nobody asks why she doesn’t use walking aids all the time. It’s just understood she uses whatever she needs, whenever she needs to. That’s so unaccepted in today’s society that people have actually become afraid to stand up, lest they get abuse for it.

People who deal with fluctuating conditions are at least experienced in preparing for the worst but knowing that’s not always the case so do what they can on their good days. There needs to be more of that shown across all medias.

Although, preferably with accuracy and research, and not a research fail, which is what I suspect is the case here.

The remaining issue is: Was Willow like Laura?

Well, yes and no. Laura was a lot like Willow when she was that age. But, a lot of disabled children are, just like a lot of able boded children are similar. There’s just this amazing phenomenon where physically disabled children develop brilliant personalities that differ from their able bodied peers, and some are quick witted. In the book, it’s explained that children who can’t learn through physical play find solace in books and television, and they become intelligent because there’s this thirst to do everything and know everything, and if all they can do is read and watch television instead of, I dunno, play football and poke things, then they will quench that thirst with good interesting books and documentaries. And Laura did have a high reading age for her age and was interested in a lot of things. But Laura also did accessible sports, so, you know, same outcome, different processes.

Mostly, they just shared experiences. I may have been the one with the Spica cast, but Laura was the one going to hospital every few months and spending three days tied to an IV pump of pomedrominate (before they switched to tablets for Laura). Laura did have to go on holiday with letters from doctors, to prove she was fit to fly, to prove that her Mum knew what she was doing. Laura had fun getting fitted for a wheelchair in a way that the O’keefe’s were only aware of. She was mistaken more than once for a baby. Even at the age of 18, she had people mistaking her for a toddler, and sometimes her and her mum couldn’t tell if people were speaking down to her because they’d mistaken her for a child, or because of a terrible attitude towards disabled people (again, different process, same outcome). There’s only so many ways you can react to these life situations, and maybe that’s what feels so familiar.

But that stops, the characters all become their own beings… and it stops being an enjoyable read.

I gave this book a 2.5/5


An Open Letter To The Majority of Shops

Saturday 14 November, 2015

Dear Almost Every Shop,

I am a twenty-something year old adult. I’ve been in charge of my own money since I was ten, I’ve understood the value of money since I was even younger. I would really like it if I was afforded the respect I deserve in being allowed to handle my own money

I understand that shops are just designed the way they are, and that a majority of people see no fault with it, so nobody feels like they need to change that. After all, why go through all that fuss and spend so much money on some sort of radical redesign? Here’s why: Because many people are stopped from going shopping at all because of badly designed shops.

It’s not all about the stepped entrance, although, yeah, that’s the biggest hurdle. I can’t really complain about the design of a shop or the placement of the till if I can’t even get in the place. But people think that just because there is step-free access to shops, that that makes them perfectly accessible. It doesn’t.

There’s aisle space to consider, there’s manoeuvrability to consider, and then the last hurdle is the tills.

Card shops are the worst, without a single doubt. The till and till person is about three foot above the floor, there’s display items and shelving sticking out on the customer’s side of it. I can neither hand my items and money over facing forwards to  the cashier, like everyone else expects to be able to, nor can I even get close enough sideways along to hand them over that way. So I have to hand it to my support worker, my support worker hands them over to the till person, this usually invites the idea that I am non compos mentis, and conversations happen, quite literally, over my head.

But things don’t have to be so awkwardly designed, nor offensive. If a bit of thought went in to these things, the following offence would never have happened.

Sometime a go, I was in Home Bargains (or as we say in Scouseland, Home AND Bargains). I’m sat 90 degrees to the cashier, because apparently people in wheelchairs don’t deserve to be able to interact with people face to face, the till is to my left, which is the worse of my two sides, and I smile and nod and say something something like “Hiya”, because the till worker has smiled and nodded to me first. It’s how we, quite literally in some cases, roll in Liverpool.

I pay my money before the plexiglass, with my right arm, because it’s easier and the person is nearer to me to reach over to pay. The cashier puts the money in the till, starts to hand me my change, and then in a sudden twist of fate, turns around and hands my change to my support worker, who had been packing up my items, and thanks her.

I was too surprised and confused to say anything, but I gave her a look. A confused look, which I then directed to my support worker, and back to the till worker. She says nothing to me, smiles at me… and I said something like “Well okay then…” and moved up and around and got my change off my support worker, threw it in my purse, threw my purse in my bag and left the shop.

I don’t know if that was prejudice at work or a brain fart, and I know I should have said something, but it’s clear that this situation wouldn’t have happened at all if tills were easer to navigate. Or if it did, I certainly would have been able to tell the reasoning behind it. Can’t exactly feign the possibility it’s easier to hand my money over to someone who is not me if the other person is further away than I am.

For as long as I have the mobility to, I want to be able to handle my money. I don’t see what’s unreasonable about that. I find it unreasonable that shops continue to force disabled people to twist their bodies around, painfully, in order to obtain the verges of the same service as able-bodied people recieve.

This might surprise everyone, but the only place I’ve shopped in which has deemed me human enough for face to face interaction, is Primark, with their wheelchair accessible Fast Track counters. Everywhere else does wheelchair accessible counters wrong. I still have to be sideways, and in places like post offices and banks, the wheelchair accessible counter comes with a lower counter on the customer side, but the person the other side is still a foot higher in the air than I am, with a card machine higher than I can reach, and the speaker hole a foot above my head.

But Primark, for all it’s ethical problems, actually does this one thing right. It does wheelchair accessible changing rooms wrong, but the tills? Can’t praise them enough. When there’s a member of staff on them, that is. There is a flaw in the system, and I’ve waited at the accessible till only to be asked to come to one further down the queue.

I’ve been thinking of putting a sign up above my headrest but apparently “If you expect me to twist around, I’m going to expect you to to do the splits” is both unreasonable and too long for a sign. There’d be some logistical problems, especially in the smaller shops.

I guess i’ll have to settle for risking injury to myself and then suing the shop’s arses off for compensation, to teach them that way.

Edited on the 18th of November, 2015:

I hardly ever update a post once it’s up, but a similar incident happened today at the till as the one I mentioned above.

Again, I was waiting before the plexiglass at the till. My mum was at the far end of the till packing my items in a bag for me, and the till guy turns to my Mum and tells her the total. Understandable, It’s not like I’ve announced that I’m the one actually paying for the items, he doesn’t know they’re mine.

We have a phrase up here in Liverpool, it’s “here’ya”. As in “here you go”, pronounced “ee’yar”. The polite use of it is “Oh, here’ya!”, with a friendly smile. And that’s exactly what I did, with my money in my hand. He ignores me, and stays looking at my mum, who nods at me. He looks at me, then at my hand with the money in it, and turns back to my mum…

I only got out an “Erm, well-” when my mum then said to him, “No, she’s paying. It’s her money!” and makes a joke. But, this guy had heard me, saw me with my money… and ignored me!?

What did he think, i was just a randomer trying to pay for someone else’s items, like a good friendly little wheelchair user who doesn’t know how the procurement of groceries work!? I mean this does feel like a heavy dose of pre-determined “Aw bless, she’s being friendly”. I can’t see why else this person would ignore me and my money, and then need reassurement from my MUM that yes, these ARE my items and I am paying for them. He saw us approach the till at the same time and talk to each other.

Next time maybe I’ll go around with a sign on my headrest that says “It’s okay, my Mummy has given me permission to pay for my items”.

For crying out loud!