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!

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.

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:

I’m a girl who loves to travel, it’s one of my absolutely favourite things. I love visiting other countries, seeing different cultures and eating new foods. But, like anyone with a disability or chronic illness, it can be very difficult and I do need to be extra careful! I’ve already had my share of exciting adventures that ended in foreign hospitals.

So from my many years of occasionally painful experience (at least it was always fun before it started hurting!), here are my top traveling tips:

1. Plan, plan, plan!

Always plan where are you going, who are you travelling with, what are you taking, even what you’ll be wearing. I realise this seems like a buzzkill because you want to be spontaneous… just like everyone else. Believe me, I understand, being carefree is very appealing but- bam!- suddenly you’re somewhere they can’t cater to your needs. Now you have nothing to eat and you’ve run out of meds and you don’t have enough water and you’re on a rock in a wheelchair surrounded by sinking sand! … Okay, that last one never happened. But that’s just because I haven’t been near sinking sand yet- it’s definitely a scrape I’d get myself into.

2. Take everything you could possibly need, especially medication

If there is a pill that you only take maybe once a month or so- take it! This will probably be the time you need it. Even if you’re only away for two days.

3. Check disabled provisions with your travel company

A surprising number of airlines will allow you to take an extra cabin bag for medication free of charge. Think about it: you’ve got your handbag, your carry on luggage, and an extra bag of medication. That’s at least space for another pair of natty shoes!

4. Always be honest about your limitations

It can seem embarrassing, especially if you are on a group holiday and don’t want your friends to know EVERYTHING… I understand the worry about others who might finding the embarrassing parts of your disability or condition ‘gross’. But it’s only you who will be hurting if you don’t share before something happens. Just be honest.

If you’re travelling in a group of lone friends and don’t want everyone to know your private life then choose one person and have a chat before you go. Pick that person based on their level of compassion, not how close a friend they are. You might be surprised by how helpful people can be. Some of my best friends now were people I didn’t know very well on the fringes of my social group but they stepped in when I was in need.

5. Know your own limitations

Know what you can and can’t do; be honest with yourself. Some people on holiday suddenly decide they are fitness fanatics and can walk everywhere, all day long. If you cannot do that then don’t convince yourself that you can. Just be honest: they’ll find it useful because if you don’t you might suddenly find yourself stuck at the bottom of a large hill sobbing: “Guys, I can’t actually go any further! Literally I can go no further. carry me!” Don’t be that person… (don’t be 18-year-old me).

6. Do not be embarrassed

This comes up a lot because sometimes it is embarrassing to have a disability, but do try to work through it. It’s very easy to say, very hard to do. I’ve been there. last year we went to Ibiza with a group of people that I didn’t really know that well. I wanted to make a good impression and not seem like a liability. One night at a restaurant I ordered something and the waitress said… something… back to me. That I completely didn’t understand. But I didn’t want to seem incompetent and they are all waiting to order… So I just nodded my head and said yes.

Never just say yes!

For goodness sake… in the end I was given a completely different meal because she had said “do you want this instead” and I said yes and I couldn’t really eat that much of it and it made me sick. Moral of the story: Don’t make yourself ill because you are so embarrassed.

7. Ask for help

Probably the biggest most important tip I can give you. Asking for help is vital. Always ask for help with a smile and people will be incredibly helpful. Everyone responds well to:
Hi, I don’t suppose you could do me a favour? I’ve got this really complicated thing that I need you to do, only you can do it. Because I know you are so good at this.

Even if your foot is literally hanging off the end of your leg, slap a smile on and butter up whomever you need to in order to get helped first. You mother was right, being nice gets you what you want… but flattery gets you everywhere.

8. Don’t let people eat your food

This one is especially important if you are sharing a kitchen with people you don’t normally. They might be your friends but they won’t necessarily remember that you have a special diet: you can only eat this, this and this and if they eat those 3 things from the fridge there is literally nothing that you can eat. Nothing! Tell them, be open, be honest, stick a label on it! It’s yours, don’t let them eat it. If they do then feel free to rage.

9. Explain your disability in words that make sense to everyone

Everyone who knows more medical terms than the average person is guilty of this but it especially relates to those who don’t speak your language as their first language. Even if you have to use terms you’d normally shy away from or even hate to attach to yourself… Push through! They need to know what you can and cannot do so they can help you.

10. Take a doctor’s name and number with you

If there is a possibility that you might need medical assistance whilst there, look up a local doctor. Preferably one who is familiar with your condition. It always helps to have a name if you are not travelling with someone who knows everything about you.

11. Consider travelling with a medical tag

I personally don’t like wearing medical ID tags… because I haven’t found one that is attractive looking. So yes, I’m going against my own advice here. But in the event that you are unconscious there has to be a way for your entire medical history and condition to be explained. So maybe I should start wearing one inside my clothes.

12. Avoid connecting flights

You are just asking for trouble. It is highly likely that the flight attendant will forget that you need help. Twice whilst I was wheelchair bound and traveling I was left on a plane when everyone else had left. The flight attendant came over with: “oh… Sorry I forgot there was someone that needed to use a wheelchair. But they can’t actually come and get you off the plane and also the plane really needs to go so you are gonna have to walk downstairs.” I went down on my bum.

Yes, true story!

Also the other way around: “All these people are on the plane right now and it really needs to take off, so can you walk up these stairs? Otherwise it will take an extra hour… ” I went up on my bum.

It’s surprising how strong my skinny little arms can be when needed!

And my last tip:

You are an awesome person! You are on holiday with these people because they like you, because they want to be on holiday with you. Please don’t feel like you are a burden. You’ve probably had some bad experiences… I know I have! Maybe you’ve had some dates with inconsiderate people, maybe you broke up with an ex and they blamed your disability… maybe it was even your parents or siblings who were rude? Possibly it was everyone at school. They likely told you some bad stuff, ok? Put it to one side, remember you are awesome, this is about you, this is your holiday. You have fun!

Fun! I order you!

Your personality is what is important and since you are reading my blog I can only assume it’s fantastic. So there we go, just a few hints and tips about travel I’m sure you got loads more, let me know in the comments and I will steal them.

Jessica Kellgren-Fozard

Category: Blog

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