When I became disabled nearly three years ago now, the very last thing I thought about was the cost. I had suffered a catastrophic, spontaneous fracture to my sacral spinal bone. Taken alone, it was terrifying, but it left nerve damage which caused my left hip/leg to be in constant, severe pain. I needed crutches to get around the house and a wheelchair to go anywhere else. To me, the meaning of the word ‘cost’ at that time was the ‘cost’ of losing my independence, losing my ability to walk, and losing my hard earned career. There was also the ‘cost’ to my partner and family of my need for continuous care due to my chronic pain.
But there was also a financial cost that I never realized was there, but that would quickly show its face.
As I mentioned, there was the loss of my income. I was the Department Head of a six member team in a large secondary school. My income was hard earned but very welcome. I was soon dependant on state benefits. That meant tightening every purse string possible. Every treat, takeout, or trip to the cinema: everything that wasn’t absolutely essential had to go. The knowledge that the damage was permanent meant the income adjustment was also.
When the need came to get a wheelchair to get around I found out I wasn’t eligible for a wheelchair on the NHS (Similar to Medicaid in the USA). I would have to buy my own. As I wasn’t able to use a manual wheelchair, bending over to touch the wheels caused me excruciating pain, I needed an electric device – scooter or a wheelchair. Now contrary to popular opinion, these don’t come cheap and they definitely don’t come free! But, I managed to find one that was relatively comfortable and had enough battery life to actually have a day out without becoming stranded in the car park of a B&Q. (Trust me, I’ve been there, it’s no fun at all!)
Cost to me £1500…
In order to get out for the day, we had to get the wheelchair into the car. Now, an 11 plate hatchback boot is a relatively spacious beast. We managed to get most of the wheelchair in except for the chair pad, which had to go onto the back seat. Eventually, this became a bit of a pain, so we turned to the Motability Guys. They sorted us out with a much more appropriate sized car. It also had the best feature ever! A HOIST FOR THE CHAIR! This meant that it could be lifted and placed into the boot in one piece. To say we were thrilled is a little sad, but we were. It was like getting all our Christmas gifts at once.
But again there was a cost! The upfront payment was fair for what we were getting, but it still was cash that we had to scrape together.
Aside from travel, We also needed to make alterations to our home. Thankfully, the council came out to assess my needs. I was granted two elevated toilet seats, four sofa risers, and a handrail. But, I was not granted any handrails at the front door, help to alter the bathroom or the shower so I could actually bathe (as tub access is impossible), or help to build a ramp at the back entrance so I could get down the steps into my garden. But at least what we did get was free and was delivered quickly. And, it has all helped, so won’t grumble anymore. Honest!
But now we have to think about moving to a bungalow as I cannot climb the stairs. The cost of that has yet to be factored in…
Besides the big financial costs there are other, less obvious costs to being disabled. One of the hidden costs I have discovered is clothes. My old clothes no longer sit right on me while in the wheelchair. My suits are too structured and are uncomfortable to sit in all day. I’ve shelved the majority of them and have had to buy more comfortable clothes that are cut to hang well on a seated person. Some may say that that’s just me being a woman, but it’s actually a real problem. Jeans with stiff waistbands, long jackets, and deep v neck tops are all no-nos. Waistbands dig in, you sit on anything long, and when you’re in a supermarket queue and the man standing next to you has a literal bird’s eye view of your cleavage-well-you rethink v necks real quick! Even my shoes have had to change. All my old shoes had a heel as I’m only 5″3 and a half, and they’re not massively comfy when your feet are on foot plates. I’ve had to buy new ones. All this may sound frivolous but hell, I’m a woman, that’s allowed……!
I would love it if there were more help out there. My PIP benefit (Like SSDi in the USA) is given as a help to counteract the extra costs, but very often it doesn’t stretch far enough. Council help seems to vary widely depending on where you live and benefits are constantly being reassessed it seems. All in all, there’s a lot of extra cash that I hadn’t bargained for. More outgoings combined with a huge drop in income equals a very stressed and anxious me. The stress this all causes is more costly than anything I have put in to my disability thus far and not at all helpful to trying to regain some kind of life.
But there are also some silver linings to this grey day…….
- * We love going to the theatre and cinema and my CEA card gets my care giver/partner in for free!
- *My Blue Badge gets me free parking and free travel over the Severn Bridge to visit my family, so that’s a definite money saver!
- * my electric wheelchair enables me to beat my nieces in any race, which would never had happened before and which is a hilarious plus!
So, the REAL ‘cost’ of being disabled is multi layered. It’s costly in emotional terms, in physical terms, and most obviously in financial terms. We all struggle to get by as best as we can, but there is a real need for more help with all of the adjustments needed after an injury/illness. We are all one step away from being disabled. I think we would all want to know that there is a really big bumper pad to catch us and not just a holey blanket.
Lynley Gregory is an ex secondary school teacher who became disabled following a spinal fracture three years ago. She is now a wheelchair user who spends her time raising awareness of disability through her weekly blog “Topladytalks” and has written articles for Disability Horizons, Scope and The HuffPost.