I survived, and to prove it I’m here

Monday 12 June, 2017

To follow up on my last blog post, I have to say that though the response I got from it was minimal, the responses I did get was appreciated. The relaxation techniques were tried (and then subsequently thrown back out the window – Sorry, but breathing calmly does not stop my head being as loud as Lime Street station on a busy day), and the more practical ones about revising did help a lot.

So, how did I think I did in my exam? Well I’d say it was an exam of two halves, which is an achievement in itself considering it had 3 questions. The first one I think I did okay with. I structured part A like an essay, I made and followed an essay in a good order, with all the revelant information I could think of, and part B was writing a short script, which I had fun with whilst trying to show I did understand the stuff I’d written about in part A. The second question started to lose me a bit. I structured it like an essay but half way through my brain shut down and I was struggling for information and coherency. It was my shortest answer and I’m just hoping that through showing what I knew about the metta sutta the length won’t be too much of a problem.

It all fell apart on my 3rd question. I hadn’t been well the week leading up so I wasn’t at my best because of that, I was also on antibiotics for it, which were not playing nice with me at all. I did take a small break to eat which perked me up, but it didn’t take away the wave of tiredness I was hit with or the grinding I was feeling in my ear. My third answer was word vomit of all I could dredge up on the topic of religious Touristification. There was a weak plan, and no structure to the essay. No introduction, no clear conclusion. I forgot locations, so I had to work around it by describing where I meant. I forgot specialist terms, and had to give a roundabout definition of them in the hopes the markers understand I did know what I was trying to say, I was just failing to do so. It was my longest answer and I felt I did as best I could do in the circumstances, but I’m not confident that I did well enough. I’ve said it once and I’ll say it again, I will be glad if I scrape a pass. I’m not asking or expecting anything more than a pass.

But, I was relieved it was done and leaving the room made me feel a bit better almost instantly.

As soon as I was able to, I went on facebook. And boy was that a mistake. I’m sure in a few years time, I’ll look back and find it funny, but right now the feeling of my heart in my stomach and panic induced nausea is still a bit too fresh.

The normal finish time of the exam was an hour before I finished, so there was already a discussion about who answered what questions and how we felt about them going. I added what questions I answered (2, 8 and 12) and how I felt about them. Under my reply, someone else replied saying they did the same questions as well, “but part b”, they added “was awful!”.

My heart sank, I was devastated. I didn’t do part b, because I didn’t see part b. From what I could remember, in my panic induced haze at the time, the question I did started near the top of the page and ended just before the bottom of the page, and the next page was the last page with “END” or “LAST PAGE” written on it. There had been no more. I’d had nightmares about a similar scenario and I felt like it had come true. I couldn’t get past the idea that I had missed the queston in my eagerness to leave. I also tried to imagine the page was folded badly by the invigilator, or the pages were printed out of order, or left out of the pack altogether, something to make it not my fault, but those ideas didn’t stick. The one where it was all my fault and that I’d failed because of my own incapability stuck, and I was so disappointed in myself. How could I? There is always one person who misses out a question, why did I have to be the one to do it? It was such a “me” thing to do, wasn’t it? The scatterbrained disabled person. Just so typical.

I couldn’t face being on Facebook anymore right them. I went to the loo, I tried and failed to eat an apple, and I waited for my taxi to arrive.

Shortly after getting in the taxi, I got a direct reply to my comment so I risked another peek on the group. What can I say? I didn’t think anything could make me feel worse at that point, so there was no reason to avoid it any longer. It had happened, I couldn’t do anything to change it, I needed to accept it and enjoy the summer holidays.

I spotted a bunch of replies to the reply underneath mine. They were all panicked “WHAT PART B” type questions. “I didn’t do part b either!” were heavenly words to my eyes. A bunch of us had missed part b. I can’t be that much of an idiot if we all missed part b, right? We weren’t All in it together, but some of us were, and that was enough for me.

And then the person who originally wrote the comment replied, with an apology.

“Oh my god guys!”, she said, “I’m so sorry! I meant question 10, not 12!”

I was torn between relief sobbing and flinging my phone out of the taxi.

To summarise to those who might have missed that. I didn’t miss “part B”, because there had been no “part B” to the question I had answered. We were all fine, and I imagine all equally relieved.

 

I don’t plan to do another exam for at least 2 years and I am hoping by then the Open University will see sense and reintroduce EMAs as an equal method of testing students on their knowledge, because I don’t think I want to go through any of that again.

But ultimately I did survive and now I am trying to enjoy my summer. And with summer comes film reviews, so watch this space!


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.


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.


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!


Beware the man in the wheelchair with worn out shoes

Thursday 8 May, 2014

I keep seeing that phrase thrown around twitter, and it really winds me up. I’ve seen various versions of it as well, each more offensive than the next. Sometimes it’s aimed at fictional characters on telly, disabled characters played by able-bodied actors, and sometimes it’s aimed at wheelchair users who don’t always depend on a wheelchair. There’s sexist versions, homophobic versions, racist versions. The ignorance in this one ignorant comment is horrific and worrying, quite frankly.

No matter how it’s said or who it’s aimed it, it doesn’t matter, it’s a saying that needs to stop. It’s offensive and it’s incorrect. It comes from the belief that every wheelchair user is always in a wheelchair, and it further perpetuates the belief that if you use a wheelchair and are then seen standing up or walking, you are faking, lying and downright untrustworthy.

Honestly, disability is not that plain and simple. Yeah, able-bodied actors playing disabled characters annoy me, because there are plenty of disabled actors out there, who maybe could add a bit of insight to the role, and they don’t get a look in. Why? I’ve never heard of one decent reason yet. But, the way people point out able-bodied people’s portrayal of disabled characters because they happen to see legs moving, feet tapping, is also wrong.

Not all forms of paralyses mean that a person can’t moved affected limbs completely, it also doesn’t mean that the affected limbs are numb to sensations, and it goes without saying that not all wheelchair users are in a wheelchair because they’re paralysed, and not all wheelchair users are wheelchair dependent. Here’s an interesting fact: Some people use wheelchairs because other parts than their legs don’t work! Their legs might be fine and functional, but it’s their backs that don’t work, they might have a heart condition, they might have chronic fatique syndrome. Even some severe forms of tourettes can affect a person’s mobility so much that they need to depend on a wheelchair.

And, for those of us who consider ourselves wheelchair dependent, it still doesn’t mean we’re in our wheelchairs all day, every day. How do you think some people get into their wheelchairs? Magical bubbles lifting us from our beds into our chairs? I use crutchers, some of my friends side transfer, some use a hoist.

All variety of disabilities and mobility aids have their own ways of wreaking havoc on shoes. Don’t believe me? Have a look at these!

my pair of old grubby trainers
These are my shoes, and they’ve been my shoes since 2009. I couldn’t get a decent photo of the tread underneath, but the worst looking shoe from the top is also the most worn out shoe from underneath.

If you’re not the type to think it’s proof of a lack disability, you’d probably think that that’s the shoe for my good leg, and maybe even that it’s all wrecked from having to put my best foot forward everytime I walk. Ahhh, if only I actually had a best foot to put forward! It’s more like not-as-dead-as-my-other-leg!foot Vs the-actual-dead-leg!foot.

Some people who understand the complexity of mobility issues might even assume that it’s all marked at the side from me crossing one leg over the other, or maybe tapping my leg against my chair or crutchers, or maybe even standing on the sides of my feet.

Well, you or that person would be wrong. Cos the worst shoe actually belongs to the foot of the leg that hardly ever moves. The whole leg is practically a dead weight, it catches on the underside of my footplate when I’m lifting it up onto the footplate, it’s constantly rubbing against the holding bar of the footplate as I merrily go along my day. It’s the foot that lands heavily on the ground, I’ve never lifted my feet properly but my knees are now buckled since my hip operation and I’m sure that has made my weight bearing even worse, from a functional viewpoint, so the underside of my shoe takes a bit of a beating.

I’ve seen shoes of the friends who use hoists, and their shoes end up in much the same state, and usually a lot quicker. I’ve seen the treads of the friends who side transfer, and the tread is always worn down, marked, marred or bobbled on the side of the shoes that hit the footplate bar. Same goes for those who use platform footrests and the metal holders.

Honestly, any comments like that are so… stupid and offensive! I can’t even believe people say it. I’ve had these shoes for 5 years, and yeah they’re the longest lasting pair of shoes I’ve had, but look at the state of them! Look at the left shoe! You can’t see it from this angle, but a small bit of stitching has come undone by the heel, it’s only because I don’t walk that that those shoes are still holding together. I imagine if I started miraculously walking everywhere tomorrow, I wouldn’t get very far before the stitching undoes completely and the heel starts coming apart.

Please, next time anyone says it, tell them how wrong they are. Or better yet, point their ignorant faces in this direction. If they want to carry on believing wheelchair users have perfect, pristine, unmarked, unworn shoes, they’ll have to keep me and every other wheelchair user in supply of new shoes every few months!

Oh, that’d be too expensive for them? Well, then they’ll just have to learn and accept the diversity of disability then, won’t they?


Blog Against Disableism Day – 2014

Friday 2 May, 2014

Yesterday was Blog Against Disableism Day.

I would have liked to have blogged for it, but unfortunately the days before were busy ones and I’d overdone it, so I spent most of yesterday in bed suffering the after affects. Gone are the days were I can blog, lying back in bed with my laptop on top of me, crushing into my ribs.

Shame really, I wrote some of my favourite blog entries with my laptop crushing into my ribs. (But remember, correlation is not causation!)

Anyway, so that’s why I didn’t blog yesterday, on the day, despite it being a topic I’m very passionate about. This topic is, as they say, very much up my street (dropped kerbs implied). So I’m blogging now. I feel like nothing shows how life in itself is disableist than missing disabled-related events because of a disabled-related problem.

And that’s largely the way disableism is for me, and for a lot of people no doubt. Disableism isn’t just about offensive opinions and words, insults that can ruin your day or discriminatory actions, it’s also passive attitudes and unchallenged perceptions.

I’ll give you an idea of how living with a complex, fluctuating disability is quite swings and roundabouts, in regards to disableism, from my own experience.

When I could walk, before the crutches became permanent accessories for my arms, I stood hunched over, on the worse days I walked oddly, I was the height of a ten year old, and quite frankly, my conversation skills didn’t really match my appearance, and thanks to many flus, acid reflux and a post-nasal drip, I also have a voice deeper than what I should have. I got stared at, a lot. I mean, a lot. I’m not being paranoid, even friends commented on it. Children would just stand and stare at me, some people would be taken aback when I interacted with them, and just in general, I could tell people didn’t know what to make of me. I assume, to them, I was just all around odd.

And then I was permanently on crutches, and I found that whilst adults took to me better, I assume down to them being able to categorise me better, children’s staring increased. Again, that’s not me being paranoid, this was also something a friend at the time noticed and commented on. I didn’t shave my head or get my nose pierced for this reason, but at least when I did do those things, it gave them something a bit more interesting to stare at whilst they were staring.

I remember on one memorable day, I got ID’d because I didn’t passt for eighteen, my disability was questioned, because I was only on crutchers, and then got referred to as a lady. Not even young lady, a child called me a lady.

I just never knew, during that time of my life, what attitude I’d be faced with next.

And then i was in my wheelchair more, walking less and less. It was the strangest thing, even with my shaved hair, in my purple wheelchair, always by myself, always seemingly a bit out of place, I got stared at a lot less. Again, something that friends noticed on my behalf.

The downfall?

Pretty much everything else. Everyone around me just didn’t expect me, now wheelchair bound, to want to carry on as normal, seemed to think I was expecting too much when I expected to be able to carry on as normal. I still took the bus, but god forbid I ask the driver to put the ramp down, god forbid I even expect a ramp in the first place! I tried to shop, and in some ways it was suddenly easier in a wheelchair, but it was also more difficult. I realised I could carry things on my lap, whereas using crutches meant I never had a free hand to carry things with, and I was always too frightened of being mistaken for a shoplifter to put things in my pocket until I got to the til. The one time I asked for assistance, I practically overcame crippling social anxiety to do so, it was for one thing, he picked it up and carried it all the way to the fil for me. It was a beautiful moment.

I did not have the same experience when in my wheelchair. I won’t name the shop, but I went in for a jar of dip. It was on the shelf that was just above my reaching height, and I flagged down a middle-aged man, who did actually work there not just a random stranger, and asked him if he could pass me the jar down. He did so after a sigh, and pointed out, ever so helpfully, that if I need help, I should get a carer.

And that’s the crux of my experiences with disableism. People in general do not understand complex, fluctuating disabilities, or that disability is a spectrum.

At that point in my life, I did not need a carer. I needed people to do their jobs and a jar of dolmio salsa dip. Disabled people are only seen as a burden, people you’re made to go out of your way for, because we’ve not been given the opportunity to be independent.

Now I do need more help, and I have a support worker. My condition is worse, and sadly I find people’s attitudes towards disabled people worse. If I could go back to the days were being stared at were my most upsetting experiences, I would in a second.

But that’s not reality, and reality is getting worse. The disabled are fighting a war we’ve been set up to lose. We’re meant to have jobs, but we’re not expected to want to use public transport to get to them. DLA is switching to PIP, a lesser benefit that is insufficient and it’s taking motability down with it, and Access to Work has been cut. Lately I’ve been in arguments that have started because an able-bodied person has refused to give me access to the wheelchair accessible facilities I require, because it puts them out, my well-being be damned. They wouldn’t even have such facilities to appropriate if it wasn’t for disabled people demanding equality.

DSA is changing, at risk of going completely. So disabled people are meant to have jobs to pay their way, but without the education and qualifications to qualify for them? There’s the attitude with ablebodied people that if they don’t go to university, at least they can try for manual labour type work or retail. The chances of a severely disabled person being able to for that type of job are low, and if they could, the chances that they’d be hired are also low.

Negative comments, insults, threatening behaviour, ignorance, refusal to act in a helpful manner, online harassment, I’ve experienced them all. But there’s something deeper and darker at work. If you’re well enough to play along with the system like I once was, you feel like you’re fine, that it’s not that bad for you, but it is. Because you have to play along with the system. When you stop being able to, you realise how broken our society really is. And the foundations are in the disableist attitudes.

We can’t correct people’s derogatory comments until we have the support and understanding from the government to flourish. The systematic break down of a disabled person’s life needs to end, not the disabled person’s life.

And one more thing, can we knock the term “differently abled” on it’s head, please? I can’t think of a more patronising term for disabled that makes me queasy, and I’ve heard a few! It completely erases the existence of disability, and it’s as harmful as the phrase “the only disability is a bad attitude.” No, disability is disability, bad attitude or not.

I’ve learnt to adapt because I’ve needed to, and it wasn’t easy. I life my life very differently to what I used to, and it’s not easy. I can no longer go for long walks, it hasn’t given me the ability to fly, blow up things, or see ghosts. I’m not a member of the X-Men, i’m disabled.

All the term “Differently Abled” says to me is that it’s more important to put a positive spin on disability than it is to understand the complexities of disability.

I am disabled, and I’m proud at working around my obstacles, but if i do things differently, it’s because I’m just that good adapting. But I, and many other disabled people, adapt out of necessity because the greater society fails to adapt to us. Most buildings are still built with stairs, lifts are still mostly an afterthought.

Calling disabled people Differently Abled isn’t just insulting to many disabled people, it’s also insulting to able bodied people.