Tag Archives: pain

Nobody is ‘too pretty’ to be in a wheelchair – Sarah

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This story is part of 30 Under 30.

 

Sarah is a 29 year-old blogger who writes about beauty, lifestyle and living with chronic pain, as well as running #SpooniePost – a project to support fellow chronically ill people. She has a Masters in English and she’s also a trustee for Enhance the UK and the editor of their new online magazine, Liability Magazine.

For 30 Under 30, Sarah has written a guest blog about her passion for beauty and society’s problem with people who don’t ‘look disabled’.

I’ve experienced quite a lot of judgement, negativity and ableism over the last few years. Don’t get me wrong, I’ve also had so many positive things happen too, but I wanted to address something that seems to be a common occurrence: the view that some disabled people don’t ‘look disabled’.

I don’t know where this skewed idea of what a disabled person looks like has come from, but I’m getting a bit tired of hearing that I ‘don’t look sick’, or I’m ‘too pretty to be in a wheelchair.’

Disability doesn’t discriminate

I’m a 29 year old woman who suffers with a long list of conditions that I won’t bore you with, but ultimately, I live with chronic pain. I use a powered wheelchair, various splints and compression supports, and I don’t ‘look sick’. Do you know why? Because disability doesn’t discriminate; my appearance has absolutely no bearing on my health.

How is pain supposed to be represented on the body? You could see the suitcases under my eyes from not sleeping due to the pain, if I didn’t hide them with concealer. You could tell me I look pale and ill if I hadn’t added foundation and blusher to my morning routine. Should I be covered from head-to-toe in bruises because then it’s visible? Then an outsider can see, and then they believe my pain is real. Then I’ll ‘look disabled.’

Sarah puts on pink lipgloss

Should I not care about my appearance because I use wheels instead of legs?

I make an effort whenever I leave the house. I make it my mission to go out at least once a week (unless I’m in a flare-up), even if it is just to the Post Office. I brush my hair and I always, always, do my makeup. I’m going out, once in seven days, I want to look presentable, I want to look cute, and make an effort. Should I not care about my appearance because I use wheels instead of legs? Should I not wear heels because I can’t walk in them?

I am just as entitled to slap on some lippy, blend out a smoky eye, contour my face like Kim Kardashian and rock stilettos as much as the next person, and my wheelchair, my disability shouldn’t determine whether I should or not. I’ve seen the sideways looks, heard the snide comments, and I’m here to tell you that disabled people have the same interests and insecurities as able-bodied people. I love beauty, I love playing with makeup, it makes the little girl inside of me happy; so when it’s time to go out, I do my best to make sure I present myself in a way that makes me feel good. After all, I put all these products on my face for my benefit.

Doing my makeup is a form of self-care for me

I’m a girly-girl, I love makeup, hair, lashes, nails; and being in constant pain has absolutely no impact on the way I look when I leave my house. Doing my makeup is a form of self-care for me, it makes me feel confident and it helps with my mental health. I know I’d feel self-conscious if I went out without some concealer at least. I don’t always put a full-face on if I’m just popping to the shop, but sometimes I do, and that’s my choice. Not for one second am I saying that you should wear makeup to feel better about yourself, because I’m not, it just helps ME take on the world.

Sarah strikes a pose wearing a black t-shirt and glasses

The perception of disability is looking like you’re suffering

But because I do wear makeup and I am disabled, there’s negative comments and misunderstanding among some. ‘Why make an effort, nobody will want you anyway…?’ ‘She’s wearing makeup, there’s clearly nothing wrong with her,’ ‘she must be better,’ – if only cosmetics had the ability to eliminate disability! This archaic way of thinking is still very much ingrained in some people as they don’t see the person, they see the disability; and it appears that the perception of disability is ‘looking disabled,’ looking like you’re suffering, being different. If you can’t comprehend that disabled people are so much more than their disability, your view is so outdated.

Wearing makeup does not make me or anyone else with a visible or invisible illness any less disabled; it doesn’t change our conditions in any way whatsoever. And no matter whether I wear a truck-load of makeup, wear the highest heels, have tattoos and piercings, it shouldn’t make you question if I’m faking, miraculously better or disabled.

I’m disabled and I wear makeup, so what?

Sarah is sharing her story as part of our 30 Under 30 campaign. We’ll be releasing one story a day throughout June from disabled people under 30 who are doing extraordinary things. Keep up to date with all of our new stories on our 30 under 30 page.

To read more from Sarah, check out her blog Sarah in Wonderland.

“I can’t get out of bed, or get dressed, most days”

New research released by Scope today reveals the extent of the social care crisis for disabled people who need support to do the basic things in life. Here are three of their stories.

Robert, 63, from Warwickshire, has very restricted mobility following an accident 15 years ago. He isn’t able to get out of bed, get dressed or prepare food without support, and is in a lot of pain. He’s currently entitled to 14 hours support a week.

Robert, a disabled man in his 60s, in bed.

In an ideal world, my support worker would come for two hours a day, and he would shower me and change my bedding, vacuum my room and stuff. But if you have a week like I had last week, where I had three hospital appointments, all my social care is used up on getting me to hospital. There’s no time left for everyday care.

If I’m on my own, I don’t have anything to eat or drink all day. So life is miserable, to be honest.

I’m lucky that my wife lives with me, but she shouldn’t have to do everything for me, and without her there is no way I could live independently.

I rang up my local authority and told them I was under pressure – I couldn’t afford the water rates, and I was being taken to court. They sent me a letter telling me to get food from a food bank 17 miles away. I can’t get there, and I would rather starve myself to death than go to a food bank.

I can’t get to see my grandchildren. I’ve never visited my son’s house. I honestly can’t remember the last time I did something socially, out of the house – we’re talking years ago.

“I have to sleep in my wheelchair, and I am malnourished”

Rachel, 42, from Southampton, uses a power wheelchair and is in constant pain. Her mobility is very restricted, and some days she isn’t able to get out of bed.

Since 2010, I have had two thirds of my care package cut, from two and a half hours a day down to 45 minutes.

My social worker just said ‘We can’t do it any more, we have to make cutbacks’, and then my care was cut almost instantly. It just feels like they washed their hands of me.

On my worst days I can’t get undressed properly in the evenings, or transfer from my power wheelchair into bed, so I have to sleep in my chair, in my clothes. I had to fight to get a care call so I can shower once a day. My local authority suggested that three days a week would be enough.

It’s horrible. When my arms aren’t working properly, I can’t prepare meals, so I end up just having bread. Before, I would have had my meal prepared. The last time I was in hospital, they told me I was malnourished.

“I’m getting deeper into debt just paying for basic care”

Jo, 47, from Cambridgeshire, has spinal muscular atrophy. She arranges her own care, employing support workers using direct payments.

I’ve got very weak muscles all over, I use an electric wheelchair all day, and I need support doing most things really – washing, getting dressed, cutting up food, moving my arms about to help me do things.

I need to have carers come in three times a day, and I technically get enough funding for 28 hours care a week. But the rate we get hasn’t gone up for 15 years, and there is a shortfall in how much that 28 hours actually costs when all the extras come in – holiday pay, recruitment, pension contributions.Portrait of Jo, a disabled woman, sitting in her wheelchair

You end up cutting corners with the very basic things. I might end up not washing my hair, because it means I’d be keeping the carer here too long. It might take me three quarters of an hour to have a shower, but social services say ‘Well, actually you can do that in 15 minutes.’

We are actually in debt. I’ve had to take out personal loans. This has been going on a good five years. We never clear it, it increases slowly year by year, and it just feels like it will never end.

If I cut back on the amount of care I get, that would mean staying in bed in the morning, or not going to bed at night. It really is the very basics.

We’re calling on the Government to urgently address the social care funding crisis when future spending plans are announced by the Chancellor on 25 November.

Find out more on our website.

Three things the new government needs to remember about disability – #100days100stories

Guest post by Josie from Bristol. Josie has a number of impairments which affect her health and mobility; she uses a powered wheelchair. She is sharing her story as part of our 100 Days, 100 Stories campaign.

In 2008, I was well and working as a nurse. Then I got ill, and just didn’t get better. I was eventually diagnosed with fibromyalgia, a neurological condition which causes pain all over the body.Close-up headshot of Josie, a woman in her late 30s

I then suddenly developed idiopathic anaphylaxis – life-threatening allergic  reactions caused by a range of things, from heat to pollen and perfume. It means I need to have a support worker with me when I go somewhere new in case I have a reaction.

My other health problems mean my mobility is limited, and I’m often ill in bed for several days at a time.

I recently got an electric wheelchair, which has been amazing and has given me some of my freedom back. I have two children who live with their dad, whom I see regularly. But I still do not have the support I need to live a full life.

Two days away from the general election, here are three things the next government needs to do to make sure disabled people are better supported.

1.  Social care should support us to live, not just to survive

At the moment, I get three short visits a day from a care worker to cook my meals, help me shower, and keep the house clean.

My basic needs are met – I’m clean and I’m fed. But I haven’t got any allocated support to actually get me out of the house. It means that some days I barely get to speak to anyone, let alone have a social life.

If I get an infection and have to ask my carer to pick up a prescription, I don’t get to have a shower that day. There just isn’t enough time.

I understand why we’re in the position we’re in economically, but I worry that there will be more cuts to social care, and I really can’t see where they are going to come from.

2.  Remember that benefits are people’s lifeline

There’s nothing in my life that can be cut. Every penny that comes in goes back out, and I have to budget very carefully. There’s no ‘fat to trim’, as politicians like to say.

If, for example, my benefits were taxed, the money would come out of my food budget. I wouldn’t be able to afford online delivery for my shopping – I’d have to send a support worker, and miss a meal or a shower.

Josie, a disabled woman, smiling with her teenage son
Josie with her son Olly (her daughter Chloe is in the photo at the top of the page)

There’s a belief among some people that many disabled people don’t want to work, or choose not to. In fact, it’s the exact opposite. I didn’t choose to get ill, I didn’t choose to become disabled.  I actually found it very difficult to come to terms with the idea of claiming benefits.

Soon I’ll be reassessed for Personal Independence Payment (PIP), and I’ll have to justify myself again – there’s always a huge fear that what I have will be taken away.

3.  Disabled people deserve a role in society

A little more support – for example, a support worker to go with me to new places – would give me so much more opportunity to take part in life, but at the moment that feels like an impossible utopia!

The loss of the Independent Living Fund has been a blow – people like me, who were professionals and could make a contribution with the right support, are being cut out of the workforce.

Working in an office or a hospital isn’t really possible for me, but I still have skills and experience that I would like to use, if I had the means of doing so.

I’ve watched a lot of political debates such as Question Time over the past few years, and I haven’t seen a single person speak who uses social care. There have been a few family members, which is good, but disabled people should have a chance to speak for themselves.

A question of equality

In the end, it is a question of equality. In a fair world, I would have the support I need to live my life, and the opportunity to fulfil my capabilities.

I’d be able to go out and have a social life. I’d have support to do some work, maybe based at home where I would be able to control my surroundings. Instead I don’t feel like I’m living, just existing.

Politicians should look at my situation and ask themselves: “Would I be prepared to live like that?” And if the answer is no, they should be ready to make changes.

Josie runs a website offering support to people with idiopathic anaphylaxis at www.iamast.com

Tomorrow is the final day of our 100 Days, 100 Stories campaign. Find out why we did it, and read the rest of the stories so far.