Mummy in her new wheels by Abbie age 6
It’s insane to believe just how long I’ve been actively fundraising for a new powered wheelchair that’ll be life changing for me and my family – for 7 months now. It was back in June of this year that my just 4-year-old Invacare Kite outdoor-indoor powerchair with custom seating initially broke down. Since then my wheelchair insurance company have had 5 separate parts shipped from the only supplier in Germany on 4 occasions, all taking weeks and months to arrive in hope this piece, or that piece will help my chair productively hang on long enough to stop me becoming housebound until a new chair, that could last me up to 10 YEARS can be funded.
In just 7 months my current chair has gained;
- 2x new batteries – £450 (kindly funded by a dear friend overseas)
- 1x set of new rear tyres – £350 (kindly funded by my brother)
- 1x new controller – £120 (covered by wheelchair insurance)
- 1x new actuator – £300 (covered by wheelchair insurance)
Yep, there’s disability-related expenditure exhibit A right there! Despite what some people believe – wheelchair insurance will only cover certain wheelchair repairs if you’re wheelchair is over 3 years old, as mine is. Reason being (as is clearly presented in my case), the average life span of a powered wheelchair off the shelf is anywhere from 3-5 years and anything after that – the likelihood of recurrent break downs are very high.
Despite everyone’s best efforts I’ve become housebound 3 times in 7 months as either engineers deemed same day call-outs as not compulsory despite them knowing I’m completely non-ambulantory and if I don’t have a workable powerchair then either I sit in it for only a few hours and have family/PAs wheel me manually from room to room or I end up staying in bed as a last resort, OR parts taking an unbelievable amount of time to be sourced from Germany.
Why Invacare doesn’t keep supplies in stock for ALL the powerchairs they sell in the UK, actually in the same country is BEYOND me and really needs looking at!
You’ve seen me on social media trying to explain without self-pity how it is to be in a chair that’s unsafe and unreliable. What you don’t see is how I’ve barely coped with NO way of adjusting my position as my tilt and recline stopped working all together 5 months into the whole ordeal.
Pressure sores & letting down my children
You don’t see the visits from district nurses to pack pressure sores, the holding back tears as I cannot sit comfortably because of them. How long I’m spending in bed because I cannot tolerate simply sitting at a 90 degree angle 12 hours a day to be involved in my girls lives. You don’t see me biting people’s heads off because I’m in that much pain but trying to power through. You don’t see the looks of disappointment on my 6 and 3 year olds faces when we can’t go somewhere, because Mummy cannot tolerate it.
Hospital appointments and discharge letters
You don’t hear how many essential hospital and GP appointments I’ve had to reschedule because my chair wouldn’t physically make it. You don’t hear the threats from the snotty receptionist who doesn’t understand it’s out of my control. You don’t read the discharge letter from a clinic you fought to be seen under because I missed 2 appointments in a row due to my chair.
Charity applications and wheelchair services
You’re not a fly on the wall to me staying up into the early hours filling in grant applications to the very little charities there are for people with muscle-wasting conditions that are over 25 years old. You don’t realise they want a sob story, for you to write to pull on the heart-strings of rich people to donate to a pathetic mother who can no longer play an active role in her children’s lives. You don’t realise the amount of times the applications bounce because I don’t meet some criteria, or the fact if I do, people like me have to wait for their application to go to panel (only happens a few times a year) to be deemed worthy of help. Decent powered wheelchairs cost upwards of 10k and charity grants are anywhere from £100-3500. In 7 months, I’ve successfully got approval from just ONE charity out of the 9 I applied for help from. People constantly tell me to fight wheelchair services, that they’re discriminating against me and that such a person they know got a decent powerchair from them so I must be lying. That one REALLY stings. Wheelchair services is a postcode lottery, in my area I do qualify for a powerchair through them but they will only provide an indoor model due to limited funding. As a young disabled person, is it really right I have to choose between getting around indoors or not at all? My wheelchair is supposed to replace my legs and enable me to do the same things within reason as everyone else. If I accepted this from the NHS, I am accepting I am so disabled I should be housebound indefinitely at any cost to my mental health.
The cost to my advocacy/campaign career
In July I was dropped by BBC 3 for a programme they desperately wanted me on to portray the life of a disabled campaigner to represent the disability community and all the struggles we face. Something I was so proud and excited to accept the challenge of. Only it just so happened I became housebound, unable to film within their tight window. I had SO many ideas to raise on TV – from Changing Places, housing and public transport, only the irony was I was dropped because my wheelchair broke down. Broken wheelchairs and issues with gaining funding is an issue MANY wheelchair users face and would have been an excellent thing to highlight to the public, yet I was penalised for it. I’m still disgusted at this.
I had to cancel 4 opportunities for guest speaking about Life as a disabled parent and talking to the NHS regarding cuts to people’s care packages. In September I even planned to rally with friends for access for the first treatment for Spinal Muscular Atrophy called Spinraza, as NICE refused it on the NHS despite it’s proven to save and improve lives. I wanted to stand alongside them despite I don’t have SMA, because I’ve lost too many dear friends to it while they waited for a treatment. My chair wouldn’t let me do this either.
If I said still managing today in a chair that is often unpredictable and dangerous doesn’t affect my mental health, I’d be lying. Everything in my life has been affected by my dwindling independence. Being a wheelchair user isn’t this grim, horrendous thing people think it is. In fact many of us see wheelchairs as our freedom, it gives us the ability to LIVE. It’s only without it that we realise the true extent of their worth. It doesn’t help that manufactures are taking the mick by making their price tag so unattainable if you don’t bring in a good wage. Again the irony is, you need to be able to get to work to earn anything.
I’m including this post in #Blogmas2018 as a sort of Christmas Appeal for my fundraiser. I’ve exhausted many other avenues of getting the funding I need to just live a normal life and without the help of kind people like my readers, soon I may not have much to blog about. Quality of life is measured by the little things, that make up the bigger picture. The little things to me are to be able to go out on the school run independently, to sit comfortably in my chair to freely move around throughout the day and to be able to say YES I am up for wherever my campaigner role takes me in the future. To fulfill these simple aspirations I need a reliable outdoor-indoor chair and I need YOUR help/shares/contacts to aid me in that. Please if you think you can assist me in any way please get in touch or merely comment below.
All I want for Christmas is my independence.
Have you been in a similar situation or do you have any useful advice on fundraising for essential equipment? I’d love to hear.