A thorny issue…
I am well aware that the much-debated subject of which I write is an understandably thony one, and to which there are no easy solutions. However, it is one which is having a huge impact on my quality of life. It also has a huge impact of the quality of life of many other disabled people too. I am wary that this will sound like a rant, as too many blogs on these and similar subjects can be, due to the depth of people’s feelings and the lack of any real solutions.
Right, where to begin. Transport has always been an issue for me, right from the point I left home at 17. There would be times I would stubbornly walk places, and suffer the consequences afterwards (blisters, pain, spasms. Other times I would fork out for taxis I could barely afford. I have always been someone who would would rather fork out for transport, and expend energy I didn’t necessarily have, in order not to miss out on social occasions. The impact of not doing so always seemed far worse. On the whole I am of a similar mindset nowadays, there just being many more circumstances, much reduced options and much more fear as a result.
For a while now, I have been compromising a great deal, whether that be sacrificing my pride and scrounging lifts off friends, (I HATE asking for lifts ). This means using my mannual self propell (SP) chair or my 3 wheeled walking frame. The walking frame or my zimmer is okay for short distances such as to/from cars and in and around friends houses. The thing is, I am not particularly supposed to be using it at all, though i can get away with it for what I’ve mentioned above. Ideally, I am supposed to be full time in my electric wheelchair. There-in lies the problem. Unfortunetly, this is where the problems start…
The saga begins..
I spend a great deal of my time trying to manage all these problems. A kind of damage, or circumstance limitation you if you will, due to being unwilling to sacrifice most of my social life. If I were to take my new electric wheelchair everywhere, I would immediately have to sacrifice going to friends houses. Then, I would only be able to go to places if I could get a rear-opening taxi, of which there are few. I’ve tried other taxis. There just aren’t many my electric wheelchair will fit into. My chair is very high partly due to the time of cushion I need and also to a possible error on the part of wheelchair services. I asked for this chair to be slightly lower than the previous one. However, it is the same highet as the last one, and the height of the memory foam cushion makes the highet of the chair from the top of the cushion to the ground still higher. Add that to the height of the chair as a whole plus the headrest, and you see the problem.
Then, add in that the local private higher firm only has a few rear-opening taxis, and that they seem unwilling to use them, either because the drivers dislike carrying wheelchair users (I have often heard this though obviously difficult to confirm) and also that this same company has the contract for carrying wheelchair-using children to school, meaning that these taxis are unavailable from 6am to 9.30 am, and from an unknown time (perhaps 2pm at the latest) until at least 4.30 pm, which is most of the time I need to use them. Given all of this, I need to look for alternatives.
One of the biggest firms in my city also have some taxis where the door open outwards, but again these are in short supply. The taxis which are high enough for my chair are too narrow to be able to turn my chair round and have the chair properly clamped in. The reverse is true for the taxis which are wide enough. I know this too my cost, as my chair got stuck in one of these taxis. Fortunately, the driver was understanding and patiently working out the best way to extract my wheelchair from the taxi. He ended up removing not only the headrest, but part of the sholder support as well, as these are attached, so to do without one I have to do without the other.
So, are there any options left to consider?
The only other solution is to use the local social-enterprise company, who market themselves as being more understanding that other firms, having staff who are more highly trained and more patient, and also stock the kinds of cars which fit more types of wheelchair. I have used these a few times, mostly without incident. However, this is also not without its problems. I am unable to book a church with them unless I book it far in advance, which would mean me being more organised. Also the times at which you can book can be restricted. There are times when I have phoned to book transport to be told that the person who takes the bookings is not available and I have to call back later. Once, I was simply told that had gone home, and the person at the other end hung up the phone on me.
There was also a more recent incident. I had to the social enterprise where someone is teaching me to to horse-ride. I’d decided that morning to take my mannual chair, (which other people then have to push for me) and book are normal taxi, transfering from chair to seat, and the same in reverse, because of how difficult it is too book an appropriate taxi for the 5 mile distance from my home to the social enterprise. A friend had booked an accessible minibus for a very similar journey to the same social enterprise, at the same times I also needed transport. When the minibus arrived to take her home I asked if I could be taken home in the same minibus. The person refused. I politely explained I was registered with the social enterprise which they work for and my friend explained that I lived on the same estate as the person he was taking home. Still, the person did not budge. I had not booked so that was that. Off they went with an almost empty minibus, and only my wheelchair using friend for company. If they had been willing to be flexible they would have had two fares for the same distance. Given that they are a social enterprise ake a company you;d have thought they’d be greatful for two fares for the same distance rather than one. Later that day, I explained the whole situation to my Occupational Therapist, who offered to call the company on my behalf and make a complaint without indentifying me. I am too afraid that were I to complain in person, I would then be blacklisted and unable to travel with the company at all. My options are limited enough as it is without restricting myself further.
The impact of all of this on my life is such that I now restrict my social life to those events where I can scrounge a lift from friends and take my walking frame with me, suffering the consequences after. For the situations where that will not suffice, I use my precious carer/PA time and ask them to take me on the bus/in a taxi with my manual wheelchair. The main consequence of this, other than the posibility of injuring the person pushing the chair, is that not having adequate support can leave me in agony, and severely fatigued for at least the rest of that day and all of the following day, limiting what I am able to do in the days following. On the times where I am unable to book support I miss out. I also miss out on using my support for things like the gym or swimming because I’ve had to use my support time for when I need to go out with my manual wheelchair.
As you can read, I feel completely out of options, as my elcetric wheelchair is also too big for the bus. I know this because I used to have discussions with my Dad about this when he headed up the day to day running of a bus garage for a multi-national organisation. He would argue that wheelchair users shouldn’t be using the bus because they weren’t a disability organisation. When wheelchair users complained the driver would not allow them on the bus Dad would go and visit them at home to discuss the reasons why.
So, what now?
The impact of all of this is now I have a fear of travelling where once I did not. I am also unsure if my chair would be allowed on trains. I fear not, given the problems I have with buses and taxis. I fear the same problems would transfer, so I have not ivestigated it, deciding it is too much trouble. The consequences of this is that I have missed out on the opportunity of a lifetime: to see some of the 2012 Paralympic Games. There are other issues as well as travel, such as I only have 16 hours support and week not including mornnings and evenings. I could have much more, given the extenrt of my disability, but am unwilling to do so given the impact it would have on other aspects of my life, so choose to have less support, while I still have a choice to stubbornly struggle on instead. One of my carers pointed out to me this morning, that had a sacrificed one sit a week for several weeks, I could have saved up enough support so as to be able to visit the games for a weekend. He fairly rubbed salt into the wound, saying that I would have loved to do it, and that any reasons why I am not going are just excuses. The truth is, I am too unsure how I would travel, given that I have so many problems already with relatively local jorneys, without adding my care needs on top of that. I could of course have thought about a motability car but feel this option is already closed to me. I am unable to learn to drive myself, having been assesed as not having enough co-ordination ir stable enough reaction times to do so. As I have carers rather than PA’s there is too much variation in staff for them to drive a motability van for me. A friend investigated this option for someone else and discovered then that only 3 people were able to be insured to drive the motability car. This is an impossibly low number, given that I’d have to get one of my parents and one of my keyholders insured as well.
I feel I have exhausted all options, therefore missing out on a one in a lifetime opportunity. In my mind, you can’t get any more restricted than that.As to the solution, I have no idea, and it is now to late to find out. I will have to be content with cheering myself hoarse from my sofa and being satisfied with friends’ accounts of the games. I bet no one can cheer louder than me…