Without a doubt, since being diagnosed with Motor Neurone Disease, I am becoming increasingly frustrated with even the simple things I used to take for granted, for example, asking for anything and boarding public transport. Prior to my diagnosis, I was active. I wasn’t as fit as I would have liked to be but I could do things for myself without having to rely on support as I do now.
MND has already significantly compromised my ability to talk and swallow and my left arm and left leg are weaker than my right. It is difficult slowly becoming trapped in your own body because my mind is still very much active and alive. I still hear the sound of my own voice but when I talk it is this slurred and nasal sound which comes out. I still want to eat and drink but when it comes to meal times, they are long and protracted and drinks have to be thickened so that I can swallow them safely. I am still mobile despite the weakness in my left arm and left leg.
I have had some wonderful days out with support from my partner and my two daughters but, occasionally, even a trip into Leeds can prove frustrating as was the case last Thursday.
I am now on antibiotics and have foam dressing around my PEG site which has developed an infection. I was told that this may happen, after all, it is not a natural way to receive nutrition. It has felt sore and I have been on pain relief for it. However, along with the emotional lability, it can leave me feeling a bit vulnerable and the emotions run away with themselves. At least this time I was crying for a valid reason.
Having been refused to go on the trams in Manchester when my daughters and me went to Pugfest on Sunday (16th July 2017) because we had our pug with us. I didn’t expect just days later to be waiting at the bus stop in Rothwell (where I live) and be refused access to board the bus because there were two prams on and I heard one categorically state, she didn’t know how to put the pram down.
My partner posted on a public page on Facebook opening the vicious debate of who has priority on public transport, wheelchairs or prams when both passengers have equal rights but should demonstrate a level of common sense when it comes to the other. Some of the comments were sickening and showed the true colours of those who outright refused to put their pram down in order for a wheelchair user to board the bus. This is discrimination against all wheelchair users, not just myself. I was upset by a lot of these comments as before I developed MND, I would give up my seat on the bus for those less able or for passengers with a baby in a pram and if the bus was a double decker, I would sit upstairs because I was able to.
However, now I use a wheelchair when I am out and about and more at the moment because of the PEG site being so sore and painful, when I was refused access to board the bus, it left me heartbroken at the bus stop. Fortunately, I was only going into Leeds to get out of the house and not for a hospital appointment. Had I been going for a hospital appointment, I would have no choice but to board that bus.
I received a lot of abuse on my partner’s post about this despite the fact I pointed out that I too used to use buses when my children were little and in their prams and, at that time, prams had to be folded down, irrelevant of how many children you had with you and how much shopping. It was all in the preparation. When you got to the bus stop, you knew you couldn’t wheel the pram on, so you took baby out, folded the pram and waited with baby and shopping until the bus arrived. You generally had your own bag, baby’s changing bag and shopping as well but it wasn’t an option back then, you got on with it; you didn’t kick up a fuss with the driver or other passengers. Having children is a wonderful thing but it should not be used against those less able in society who don’t ask for and generally don’t want to be disabled.
If anything, this has taught me a valuable lesson in life, there are the minority in life who do not respect your situation and they don’t care about the consequences either. We live in a society where there are those who are selfish, showing no compassion or thought for others and no thought that one day it might be them faced with the refusal because of disabilities. I am more than happy to give up my right to board the bus if the bus is full but not because passengers with prams think they have more right than I do.
I intend to fight MND all the way until I can fight it no more. I don’t intend to stop at home and wait for the grim reaper to come along, and if this means going out and taking up a wheelchair space on the bus, then so be it. I have used public transport all my life and the blame for this lies squarely with the bus company who run the service where I live because they have put buses on our route that only have the wheelchair space, there is no designated pram space on this service so this vicious debate will run on and get out of control until the bus company put buses on our route that are fit for purpose.
With respect, I offer my full apologies to those who read this and are willing to make space for a wheelchair user. For those that won’t, I hope you find yourself in my situation one day and I wouldn’t wish it on anybody but then you’ll know how difficult life can be because baby won’t always need to be in a pram but a wheelchair user will always need to use a wheelchair.