I’m going to open this by saying that this is the most honest blog I have ever written. It’s on a subject that I know lots of people will resonate with, and I’m ready to talk about just how difficult this journey has been. I hope this helps someone. And I hope you know that if you’ve had a similar experience, you are not alone.
12 years ago, I suddenly became unwell. I went from an active young girl who was training to be a dancer to being spoon-fed in bed. I spent the first years of my chronic illness incredibly unwell, and at one point, my organs were shutting down. It was a dark time.
We decided that we needed some help, so we applied for DLA (old-style PIP). I was denied it, and I lost my appeal (despite being mainly housebound and only able to walk a few steps). We had to attend a tribunal to get my benefits (which I eventually won), but the damage had already been done. Nearly 2 years without support had an impact on friendships, family life, and my care.
My ESA Assessment
ESA was the next benefit I needed, which stands for Employment and Support Allowance. I went to my face-to-face assessment and got sent home because they had over-run. That was my weeks’ energy gone. When I returned for a rescheduled appointment, we waited for around an hour, and at this stage, I felt so ill I was sliding into the side of my wheelchair. But I held on. My Mum came in with me when it was finally my turn, and the assessor started writing notes about my conditions. “I saw you move your legs,” the assessor said. I held back my tears and continued, professionally, with the assessment. I burst into tears when we got in the car.
The Brown Envelope
There’s one thing people with disabilities dread. The brown envelope. I will not be the only one who has a panic attack every time one comes through the door. I know that that brown envelope could take my independence away from me instantly, and it terrifies me. And if it isn’t getting your benefits taken off you, it’s a reassessment which is a book of depressing forms where you write just how awful things are, and the majority get ignored. The system that’s supposed to be there to support fails many in more ways than one. Those who are lucky to receive benefits spend their lives terrified that a brown envelope could destroy their world.
Now, something I’ve never spoken about. When you are on benefits such as PIP, you continuously are scared someone is out there watching you and going to report you to DWP. Well, it’s time to share this has happened to me on more than one occasion. I clearly remember the first time it happened, and it broke me so much that I was incredibly concerned about my mental wellbeing. But, I do have to say DWP was brilliant with it all. It is anonymous, but I have a good idea who did it, which helped me process what happened. The case was dropped very quickly, and I was just told to carry on with life.
Things went quiet until about a year ago. My profile grew, and with that, you do get some negatives. Last year, my ASDA campaign was something that hadn’t been seen before – an ambulatory wheelchair in a big social media campaign. Not only did I stand up from my wheelchair, but I even danced for a short while, and you can imagine how that went down with some people! Overall, it was a well-received campaign, but my boss at work did receive an email saying I ‘don’t really have ME,’ and I shouldn’t be a representative for the charity. Fabulous.
Behind the scenes
My latest campaign has been released, again with George ASDA. It’s something I’m incredibly proud of, but people see the finished product. They don’t know I dance for a minute then have to stop so my Mum can lift my legs up, so I don’t faint. Or that we had to go back to the hotel halfway through the shoot so I could have a lie-down and nap. Or that last time I pushed myself too far dancing, I had anaphylaxis which is why I am so cautious about how I manage my time on set now. But one comment popped up… ‘Wait until DWP get a load of this,’ and I laughed. Because what is wrong is that society has an incorrect view of what disabled people should be doing and what people on benefits are like.
Receiving benefits is never something seen by society as a good thing, but let me tell you that it’s the last resort for both disabled people and carers alike. There are so many hidden costs for people with disabilities; wheelchairs/powerchairs costing many thousands, equipment, care contributions, adapted clothing, transport… It’s hard to make ends meet. Scope revealed life costs an extra £570 a month for people on disability benefits, a significant outgoing for disability-related costs.
Some good(ish) news. I am now off Employment and Support Allowance! I want to start by saying I don’t think anyone should feel any shame claiming benefits when they need them, especially disabled people. I’m celebrating being off ESA because it ties in with finally building up enough work so I can manage without benefits. I’m not much better off money-wise, as there’s a bit of a weird gap when you come off ESA, but it’s one less brown envelope to dread. Isn’t that sad? I don’t know if I’ll be able to keep up with my work schedule, so I might end up needing support again, but for now, I am officially making my own money.
However, I’m still on PIP (and since my condition is lifelong, I don’t think anything will change from my side). I still get incredibly nervous. I became paranoid this week when I saw the same car twice walking my dog, and a woman took a picture of me. I worry that someone will mistake my ‘good’ day (it’s not even a day, it’s a good few minutes!) as being a fraud when really, it’s me trying to live my life. I worry that one person’s snapshot could ruin my life.
So, that’s why I’m here today, writing very honesty. To tell you, we shouldn’t have to be scared. To say to you, we have variable illnesses, and we should be allowed to have fun. We aren’t all running marathons (although it feels like it!) – we might just be having those few special minutes outside on a swing, or with our friends, or just living. We need the support, but we also want the chance to live. So let us.
Our vision is to create a world where every wheelchair user feels comfortable and in control of their temperature.
The WheelAir system is the first temperature control system designed to fit any wheelchair. It disperses air evenly across your back to lower your core temperature, keeping the skin dry and clean. This helps to avoid symptoms caused by overheating and over sweating, allowing you to stay comfortable and in control.