I have cerebral palsy. I have had it since birth. It’s not deteriorating, I’m not getting worse, I’m not getting better. I’m at a level where I can handle it and it’s not so bad. It effects my hands, in a minor way, and most noticeably my legs.
When I was younger they tried to correct it with surgery. I ended up in a wheelchair, I took a year off everything and made myself walk 1km a day.To get back on my crutches.
I used to qualify for what is called a disability allowance. It helped pay for shoes, crutch tips and a gym membership.
Shoes are one expense people don’t think about. I go through shoes every 3 weeks. Because I kinda drag my feet and they tilt to the side. I try to keep it to $30 or less. I could try a more expensive brand but I have had shoes that barely lasted a week. If I spent more and that happened it would be quite depressing, although worth it for all the people that give me advice on shoes, currently I rock a $12 pair from The Warehouse.
Crutch tips, This is a fluctuating cost. It currently costs me over $18 a week. I am changing at least one tip a day. Later when it gets cooler I’ll spend $18 a month.
The gym. This is my most important expense and if I wasn’t disabled maybe I wouldn’t go, to be honest I think I’d just play sport and do a bit of jogging for fitness, It costs me $251 for 6 months at the gym. I do get subsidies ed $300 every 6 months. Beyond that I spend $35 a fortnight on a session with a trainer. It’s worth it as it makes life easier long term.
Currently I am employed so I no longer receive benefits. The parking permit I have costs $50. I do have a total mobility card provided by the Cerebral Palsy society. That halves my taxi fares (in cabs that accept it, Uber doesn’t seem to) and I have vouchers that lessen the cost. A $40 fare actually ends up costing me $10 in actual cash.
A lot of my costs come about because I’m active, really active. I burn through shoes and crutch tips because I am moving a lot more then other people on crutches It has been a source of complaint for nurses who come round to check on me (for my kidney condition I used to need regular checks at home) The health service is reluctant to call a mobile, so appointments would have to be booked well in advance and I’d end up taking a day off work and stay home and wait for the nurse.
Being active has undoubtedly kept me out of a wheelchair and in some ways I struggle to see how I would cope in a chair these days. Already I don’t walk home late at night any more, I used to do that.
My health now a days has left me feeling a little more vulnerable and I’m now more inclined to taxi home rather then catch a bus and walk for 10 minutes at 2AM.
Do I feel a loss of freedom? No. Auckland is a fairly accessible city.I suspect if I had ever been able bodied my view would be different. But I haven’t yet experienced a building I can’t get into and easily navigate.
The public at times can be very helpful or unhelpful depending on their mood. As I’ve mentioned in other posts I’ve had several faith healing attempts. Why do I go through with them when they ask? We’ll it’s hard to yell at them because they aren’t pushy they’re often very polite. Also I tend to fall for the “Can I pray for you?” line. I think they mean at home in their own time and it’s too late that I remember they mean right now!
I’m always grateful for help/assistance when I’m out and about. But the other part of the equation is sometimes you can see that the person helping me is getting something out of it as well. A sense of paying it forward I guess.
I’ve had people offer me rides to places if they see me walking in the same direction they’re driving, I am judicious when I accept a ride, and I’ve often asked people if they could place my shopping in my back pack, some shops do this automatically. I’ve also had someone carry me up some stairs, this happened once. I didn’t ask for it. I was walking up stairs and an Asian man saw me picked me up carried me up the stairs put me down said “bye” and walked off.
Why point out that he’s Asian? Because I’ve had people use me as a reason to abuse Asian people and it bothers the hell out of me. Usually when I’m getting on a bus if they see an Asian person sitting in the front seat they’ll have a yell at them to move.
1. I don’t like the front seats, my legs get cramped and I’ll have foot spasms.
2. They maybe unaware it’s a disabled section.
3. It may not be the disabled section. newer buses have placed the disabled in the middle section of seating.
4. They may not speak English so yelling isn’t going to do anything. One driver actually physically grabbed someone and attempted to move them. I was already seated when this happened. It was really awful.
Good and bad this is the cost of my disability.