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A Fairer Society for All: Achieving everyday equality for disabled people

A Fairer Society for All: My Experience at the Labour Party Conference 2017

 

If you follow me on Twitter you’ll know that this year I was invited to speak on a panel at the Labour Party Conference (I know- me! Actually being heard by people with political power!) by the Fabian Society, the UK’s oldest political think tank. Our topic of discussion was how political policy can be changed to make suer the welfare system actually works for disabled people. Many people have been asking for a way to watch or listen to the debate and although it was recorded I can’t seem to find it… whoops! I’ll add that link as soon as I can! For now however, here’s a brief write-up of my thoughts on the topics discussed.

The panel:

Debbie Abrahams MP: shadow secretary of state for work and pensions
Kate Green MP: chair, Fabian Society
Anna Bird: executive director of policy and research, Scope
Jessica Kellgren-Fozard: YouTube Content Creator, Model and Ambassador for Scope.
Moderated by Andrew Harrop: General Secretary of the Fabian Society.

Our Topic: Achieving Everyday Equality for Disabled People
Kate Green, Jessica Kellgren-Fozard, Andrew Harrop, Debbie Abrahams & Anna Bird

Life today is still much harder for the 13 million disabled people in this country than it needs to be. We called for action across the Government to deliver meaningful change allowing disabled people to achieve everyday equality and gain the same opportunities as everyone else. The welfare system was often mentioned, in particular how it doesn’t give the support disabled people need to participate fully in society. It’s my belief that the system needs an overhaul; that it should work for its users rather than constantly attempting to reduce their number.

Both government services and media perception need to come from a place of assuming the best in people- assume we want to work, assume we want our independence. Because to be honest I don’t know a single disabled person who doesn’t want to have a job. Whether or not our disabilities and chronic illnesses make the standard working week impossible, we still want independence.

Carrot and stick analogies don’t work for disability benefits
Kate Green, Jessica Kellgren-Fozard, Andrew Harrop & Debbie Abrahams

You can’t punish someone for something they can’t control. No matter how many times you hit them with that stick… they’re still going to be disabled. Probably more so. You cannot sanction someone and hope their disability goes away.

I’m not able to hold down a full 9-5 job and I struggled terribly with a part-time job because my disabilities and chronic illness don’t work to a schedule. I was in the ‘can’t work’ category of the disabled people’s Employment Support Allowance but I lost the benefit when I married my wife. Factoring in a cut to your family income shouldn’t be part of planning your big day but sadly it was.

In my view means testing shouldn’t be part of any disability related benefit. Whether you’re a millionaire or impoverished you’re still facing extra costs – on average life costs £550 more a month if you happen to be disabled. From high energy bills and higher insurance costs to specialist equipment and food. Those are costs you have no control over and they’re often for things you have no choice but to buy.

Secondly, this implies that the disabled person is now ‘someone else’s problem’, namely their lovely new partner. It made me feel like a burden; a weight on my family and now on my wife. How can I feel independent when I have to ask for pocket money? And finally, means testing is dangerous and unsafe. I obviously have a lovely wife who cares for me very much but two in five disabled women will experience domestic abuse and you’re potentially tying their only income to their abuser. Disabled people cannot just go out, get a sneaky job on the side, save some money and then make a break for it.

I’m an adult, not a burden or a child, and I want to be treated as one!
Kate Green, Jessica Kellgren-Fozard, Andrew Harrop, Debbie Abrahams & Anna Bird

I agreed with the MP Kate Green’s speech about creating a holistic strategy for disabled people that viewed their life in the round. Achieving ‘everyday equality’ means achieving equality in every aspect of disabled peoples lives and ensuring the ability to participate, from housing to good quality health care to participating in public life and being part on the community to having a family life.

She also spoke about the glaring employment gap between disabled people and the rest of the working age population. For instance, only seven percent of people with a learning disability are in employment, despite many wishing to participate. It’s my belief that this exclusion starts from school age and I’ve spoken about my own difficulties being a disabled student before. The British education system is currently failing disabled students but it’s not through a lack of commitment or ambition, it’s purely that our system doesn’t cater for disabled students’ needs.

Kate Green & Jessica Kellgren-Fozard

Once we leave school and go on to join the workforce we’re supposed to receive help from Access to Work, a government scheme to provide support for disabled workers. In practice the scheme is almost a secret- I’ve stopped counting the number of disabled people I’ve introduced it to! Not only that but it’s openly known no matter how many hours of help you ask for you’ll always get half of what you require. Access to Work is an amazing thing and I’m so grateful for it since I could barely do my job if it didn’t exist but it needs to be better managed.

Revolutionising the welfare system

I was gladdened that both of the MPs on the panel talked about Labour’s commitment to revolutionise the process of applying for welfare. Making it a positive experience where the gathering of relevant information is a system based on trust and confidence can only be a good thing.

The current document to apply for Personal Independence Payment is 40 pages long and deeply complex! Sadly, unless you get expert help your chances of getting PIP or similar are very slim. It’s important that disabled people are financially secure because only then can we achieve our full potential when it comes to benefiting the society around us. We have so much to give but it’s often not considered.

Anna Bird said that from Scope’s perspective, after 7 years of austerity it feels like the welfare system is an emergency service, constantly fighting fires rather than providing a stable base. She agreed that the system should be rethought and looked at as a helpful tool built on trust not a frame of sanctions and red tape. Finally she concurred with the UN that, with such high levels of disability discrimination, the British government has failed to protect the rights of disabled people.

The Shadow Secretary of State for Work and Pensions, Debbie Abrahams MP told the room that Labour will be publishing a paper to pressure the government on the disabled budget before the next big financial statement in autumn. If elected, they want to make sure they engage and communicate with disabled people, to make sure what they are proposing to the disabled community will actually be effective, and to keep them involved in forming policy. She spoke strongly against 0 hour contracts, which many feel inflate the official number of disabled people who are ‘in work’ without bringing any monetary benefit.

Moving Forwards
Kate Green, Jessica Kellgren-Fozard, Anna Bird & Andrew Harrop

The role of government in disabled people’s lives should be to help them help themselves. Through consultation with disabled people and their carers and fully including our voices in the creation of policy and welfare systems we can forge ahead to become fully part of society. I also feel that this is the government’s job and they need to stop relying on charities to fill the gaps.

Going forward I feel we need a greater understanding of how changeable conditions can be. No two people, even those with the same condition, will have the same experience of disability. The entire PIP system needs to be overhauled creating a person-driven benefits system. Let’s change the conversation to how disabled people can enhance the rest of society when given just a little help.

We have the right to be here and we have the right to be treated well.

 

If you enjoyed this article you might also like this video about the main political parties policies for disabled people:

Chronically Fabulous · Femme

Why is Youtube Demonetising Disabled Creators?

Since YouTube brought in its new rules about monetisation a few months ago I’ve seen my some of my videos being declared ‘not suitable for all advertisers’ and having their adverts pulled. This means I’m loosing the money I would have earned from each view and is being applied to videos released far before the new algorithm! Disturbingly, demonetisation is predominantly happening to videos that are about or even just mention my disabilities!

Smoothies: a controversial topic.

Is living life with a disability really a sensitive or controversial issue, as the demonetisation guidelines suggest?

Adverts have also been pulled from many of the videos I make with my wife, Claudia, or videos in which I discuss being gay! Whilst it’s awful that LGBT videos are being targeted- especially since our videos are largely PG- I at least understand why it’s happening. Although the sexualisation of people outside of the heterosexual realm is horrific and wrong… at least it’s a reason.

Examples of Lesbian related videos demonetised on my channel.
But why are my disability-related videos being targeted?

My ‘disability’ videos targeted for demonetisation:

  • The video in which I explain part of my disability and give tips on living with a chronic illness.
  • This video that says we can still take pride in being disabled people.
  • The video where I question what ‘normal’ means anyway.
  • This video in which I share my experiences of partially loosing my eye sight but also say that you can go on to live well.
  • The video where I share my frustrations at being invited to an event to speak about disabilities but there being no disabled access.
  • This video with handy tips for beating nausea.
  • The video sharing what’s in my pillbox and how important it is to have a good system when you take daily medications.
  • This video about using a healthy diet to control symptoms.
  • This video that asks event organisers to consider disabled people’s needs.

That last video being picked up particularly annoyed me- I’m just asking that disabled people can be included! So I took to Twitter, tweeted the video’s tags and asked YouTube exactly which of them was setting off the algorithm. Was it “accessibility”? “Disabled friendly”? “Deaf”? “Wheelchair”?

This video is finally monetised after manual review
Tags that’ll make the $ icon go yellow!

 

Their response was ‘check our guidelines’ and then, when I said I had already done that, ‘check our guidelines.’

Thank you, that’s… so helpful.

If you check through you’ll see they’re monetised now… because they should not have been demonetised in the first place. Creators can only request that video demonetisation be manually checked if the video has gained 1,000 views in the last 7 days. Unfortunately this means a video will miss out on all of the money is could have earned before the manual review takes place. One of my most recent videos, Wife Does My Voiceover, gained it’s first 1,000 views in just a few hours and was only manually checked after going over 2,500. That’s a lot of potential revenue to miss out on!

YouTube and other online routes are a great opportunity for disabled people, since many of us would otherwise struggle to work. Equally, disabled voices having a platform to be heard is a good thing for non-disabled people. The best way for people who have no experience of disability to learn about it is from people who have disabilities. How can we normalise things if they’re being marked as ‘controversial’ or ‘incendiary’. Is it really controversial to be talking about daily life with a disability?

Why is this happening in the first place?

Other disabled creators who have faced this on YouTube include: Rikki Poynter, Andrea Lausell, Krystal-Bella Shaw, The Aspie World, Connopolis and the Invisible I. None of them have heard back on why this has happened either!

Here’s a link to YouTube’s guidelines, have a read through and let me know what you think. Why is this happening?

I’m calling on YouTube and its advertisers to be brave and recognise the power of disabled creators and the market for disability content. There are 13 million people with registered disabilities in the UK alone, with a spending power of over £200 billion. That’s a lot of money these companies could be missing out on due to short sighted prejudice.

ps. This video isn’t about disabilities or gayness, it’s about my puppy’s birthday present, but despite being adorable it was still demonetised!

UPDATE 20/09/17

Time to get angry at again… demonetising a video about in the middle of ? That’s low.

Chronically Fabulous · Fashion · Femme · Honest Beauty

Disabled Style & Fashion

Nine years ago I was part of a BBCThree show called Britain’s Missing Top Model: a not-that-slight rip off of the modelling challenge America’s Next Top Model but with disabled women as the supposed ‘missing’ ingredient. There were eight of us with disabilities ranging from paraplegia, deafness, limb amputation and… my ‘neurological disorder mixed with connective tissue disorder and various annoying symptoms’- which they found wasn’t quite so snappy for trailers!

We competed against each other in a weekly mini challenge, where we were meant to learn something new, and a photoshoot where we were meant to put our new knowledge to use. For a show ostensibly about fashion and style it ended up being more about disability politics: who was more disabled and thus more excluded from the world of fashion?

After the show many viewers I met mentioned being astonished that disabled people were interested in fashion at all! Even random middle aged men who came upon me in WHSmith and despite claiming it was only their wives and daughters who had watched the show still knew the details of every episode. “But the fashion world is so looks based, why would you want to be part of that?” people asked.

“Disabled people can’t be stylish,” one girl said, “they shouldn’t try.”

To me, fashion and style are very personal things and don’t need to be dictated by others!

When I was a teenager in a wheelchair struggling with my new life in and out of hospital fashion helped me to claim my identity beyond being just ‘that disabled girl’. I’d always had a slightly eccentric style, preferring vintage dresses and old fashioned hairstyles over low-slung jeans and ironed flat hair (hello early naughties muffin tops, how we have not missed you) but being ill crystallised it. In hospital I’d curl my hair and put lipstick on because it made me feel more of a person and less of a subject. When I paralysed my arms I talked other people into doing it for me and when I was in my wheelchair I found a great way to tuck my big skirts and petticoats under my bum so they’d still look full but wouldn’t catch on the wheels.

Having an episodic condition I’ve learnt over the years that adaptability is key.

I have certain clothes that are perfect for when my arms don’t work or when I have to wear a sling or use my crutches and I know the perfect nail varnish to complement my wrist splints- although getting my wife to apply it just to my nails is still a bit of a challenge! All of these clothes are, in my mind, very stylish. No matter how much I’m hurting, being happy with my outside makes me joyful on the inside- whatever has gone wrong with it this time!

Fashion comes and goes but style stays the same. The important thing is to wear whatever the hell you think looks best and sod everyone else. There are no shouldn’ts and can’ts when it comes to your own personal style. When I post an Outfit Of The Day on Instagram I never try to hide my hearing aids or my scoliosis (although most people don’t realise and think I’m just leaning sideways on purpose!) and if I have to use crutches that day they’ll make a graceful cameo appearance!

In this column I’m going to be sharing some tips, tricks and reviews of great brands that show being disabled doesn’t mean fashion is cut off from you- even if everything the NHS gives out happens to be beige… tip number 1: Don’t wear beige.

This article originally appeared in Liability Magazine, the only magazine for disabled women written by disabled women. Follow them on Twitter, Facebook and now YouTube!