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.

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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!