The train to nowhere…..

All aboard should have been the delightful shout heard today, however the more accurate shout would have been “all aboard, except the gentleman in his mobility scooter and his daughter”. Not such a welcoming call. You see, very rarely my wife has a quieter day and work, and is able to take a lunch break. Today was one of those days so she messaged me and said did I fancy meeting her for lunch with our LG after nursery. Since she will be starting full time school in September I thought this was a lovely idea. The only issue was how would we get there?

Yes I have an adapted vehicle and can drive, but some days I know my pain levels are such that my mind and reaction times are affected enough so as to not want to get behind the wheel. Other days driving alone (without someone else who can take over from me should I need it) having taken my medication is not a good idea, so again I have to be sensible and not drive. It is one aspect of independence that cannot be changed as my safety and those of other road users is always paramount in my mind before taking any journey and this is easily accepted. I have firsthand experience of how life can change suddenly, in an instance at the hand or rather car of others and I would never knowingly put anyone else at risk of this myself. It is perhaps why disabled people are so desperate for the improvements to be made to public transport to enable them to still go about independent lives. However we can not rely on public transport.

Today to get to my wife for lunch it was either bus journey’s close to 2 hours meaning we would miss lunch or an 11 minute train journey, with two slight snags, firstly I needed to get on the train on my mobility scooter and secondly I needed to get back to Wymondham via a train also on said mobility scooter. This is the frustration of being disabled and public transport. Firstly everything has to be planned the nth degree meaning spontaneous lunches very, very, very rarely happen. Why? Well in order to catch the said train I had to call the train lines disability services, very polite and very helpful, although despite several back and forth conversations it took over 10 minutes to get confirmation of what I said initially, which was that my scooter is acceptable to be transported on a train. The only downside of this was that because I had not given 24-48 hours notice there was no guarantee that there would be people on the train in Wymondham available to get me on, off in Norwich and the return journey that would have to be via Attleborough as there is no access to platform 2 in Wymondham.

It is perhaps not so much a case of being on a train to nowhere and more a case of being unable to get on a train anywhere. This isn’t a grumble at the services which are provided as when they are booked they generally work well. It is more a frustrated plea that people will think beyond what they can do on a whim and more a case of asking you all to put yourself in someone else’s shoes and start to question what it is disabled people are asking for. To some it is expensive, money wasted, not a necessity and any number of other excuses I hear, to disabled people it is our lives. No last minute trips locally, last minute holiday deals not a chance, simple cinema trips require phone calls and whilst there are improvements being made these are not always done with a full understanding. I ask you all to engage with people, speak to people and see what it is people really need, and what would be an added bonus. There are many stories of people stranded on tarmac, soiling themselves on trains and so on, these are not norm but they do occur even when every effort has been made to book assistance. No imagine your boss calls you in for a last minute meeting, or asks you to travel to a conference in place of someone who is sick, or simply your wife wants to meet you for a surprise lunch and never being able to achieve those things. Would be frustrating wouldn’t it?

My disability does not need sympathy  

I say this having recently read what I considered to be a very offensive post on social media. The post itself was bad enough but the comments that followed it were unbelievable. 

The post read along the lines of “whilst I have great sympathy with you and whatever your disability is being in a wheelchair doesn’t mean you can let your dog foul (I’ve toned it down) on the footpath and not clear it up, if you can’t clear it up you shouldn’t have a dog” Then there was a link and photo to an extending pooper scooper type device available  from a national store. 

This post caught my eye for a number of reasons. 

  1. As a disabled person I do not want sympathy, and nor do any other disabled people I know, we want respect, understanding and to simply be treated fairly. 
  2. So being treated fairly and equality does rightly mean disabled people are not exempt from cleaning up after their dogs so why did this annoy me so much. Well there are many other posts about people letting their dogs foul and not clean it up. Not once have I seen a link to a pooper scooper or dog bag, not once have I read I have sympathy for the able bodied ‘lazy’ person who….. 
  3. Comments made read this is why disabled people shouldn’t have pets or children. I kid you not (pun intended) a story that started about a man not clearing up dog poo got to this. One person claimed more than 50% of dog poo comes from guide dogs as their owners can’t see to clear it up. 

    Usually I wade into these type of arguments trying to educate about disability and empathy and understanding,  but I just found myself saddened that 73.7% (yes I did the maths) of the comments were derogatory, insulting and offensive not about the poo being left behind but about disabled people and disability. When did we become a nation who, not even knowing the facts can and do abuse people with disabilities so openly. There are many ‘working’ dogs that help people with a range of disabilities and they all have to have a lot of training, certain sized areas at home in which to exercise and a number of other checks in place to ensure the placement is correct. 

    If we move away from working dogs, what about someone like me, I was happily going along healthy, exercising enjoying life when another person takes me out in a car and changes my life forever. Are people saying, at that point when the doctor says oh by the way you’ll be in a wheelchair, or we had to amputate, or you’ve lost your sight or hearing and so on, that they should finish the sentence by saying we’ve called the police and rspca so your children and pets can be removed too! 

    Get real people, a disability isn’t something people want sympathy over, nor is it a barrier that should prevent people from leading a happy and fulfilling life. The barriers themselves are physical things put in by others, stairs, high kerbs, steps in to houses/shops, narrow door ways, dog parks/exercise areas that are inaccessible and such like. We are all human, he may have run out of bags, he may simply be among the small % of bad dog owners who don’t pick up after their dogs. 

    I do know however as a disabled parent with two children I am immensely proud of that I do not want society’s sympathy I want its action to make the world accessible to all, for people to care for all and most of all instead of slamming people on social media all the time get out in the world and talk to people, help those who ask for it and live your life educating yourself by speaking to people who are different to you as we are all UNIQUE  

    When disabled people don’t care about blocking pavements is the battle lost? 

    Since setting up a local Access Group focusing on,  improving unsurprisingly,  Access in the area I live there has been many times when I have felt that people act as they do because they do not fully appreciate the issues faced by others. It is not exclusively for disabled people as Access covers a wide range of people. Pushchair access and LGBT acceptance are just two areas of Access that go beyond being disabled. 

    Each area has it’s own issues but by far the biggest area of complaints the Access Group receive surround parking. Either people abusing disabled parking bays using them when they don’t have a badge, the response to challenging behaviour being I’m just running in and out or there are other spaces free blah, blah blah blah or even worse – well you don’t look disabled so it’s none of your business. The truth is it is everybody’s business, Disabled or not challenge others as a caring community. A free car parking space some weeks is the difference between me seeing people and me returning home not getting out and feeling very low. Especially when I can see cars without badges displayed. This does go both ways and blue badge holders are guilty of parking in parent and toddler bays and unless they are parents with toddlers with them they should not park there either. It is this mutual disrespect (a bit like cyclists and car users have developed) which causes people to have the mentality it doesn’t matter. As a wheelchair user I can tell you it really does matter. 

    The real problem is however that as a group we are trying to educate people the importance of these spaces. The wheelchair users who need the wider bays, the colon cancer or crohns disease sufferer who needs to be close to the entrance to run in to the toilet to avoid embarrassment, and all so people think twice when they park. 

    In recent months I’ve spoken to postmen, delivery drivers and bin men regarding parking and keeping pavements free. Another problem is vehicles parking on pavements and blocking them so that parents with pushchairs cannot get past and nor can people in wheelchairs or on mobility scooters. Visually impaired people can have accidents the list is endless. I have explained this to postmen and delivery drivers who have been understanding when I’ve spoken to them and generally when I explain what issues their parking has caused they are respectful and listen. More often it is the general public who are rude, aggressive and intimidating when challenged. I recently thanked the local binmen as they have little time to collect and return bins an average if about 10 seconds I believe, but even still they get the bins put back out the way and keep the paths clear for people who need it this is great and I felt it deserved a thank you. 

    After all this, why the title. Well today we took my LG around our cul de sac on her balance bike. I can’t do it on my own as if she falls I cannot pick her and her bike up again, so guilty as I feel we make the most of days together. We’re going around our road and 5 houses round the corner and a little red car is blocking the pavement so we go into the road, in the door I can see a blue badge wallet. To make the journey worse almost opposite once we get around the cul de sac is another car blocking the pavement and I find myself reversing and back down and into the road. Going past the vehicle it is a WAV (wheelchair accessible vehicle) complete with person hoist and ramp inside. I have to ask myself, if we cannot get drivers or passengers with complicated needs and wheelchair users to park considerately for others in a similar condition what hope for converting other’s habits??

    I certainly won’t give up as there is so much more to achieve to make Wymondham Accessible and I hope to be able to start educating the next generation so they are understanding and compassionate. They will also probably have more success in shaming their parent’s to move than I ever could. Making it illegal and more easily enforceable would be a start but Rome wasn’t built in a day. 

    5 Things I Don’t Admit on Bad Pain Days | The Mighty

    THIS IS A WELL WRITTEN ARTICLE THAT COULD BE FROM MANY PEOPLE WHO SUFFER CHRONIC PAIN, ILLNESS OR DISEASE. REMEMBER ALSO THAT PEOPLES PAIN IS ALL RELATIVE – MY PAIN IS UNIQUE TO ME, MY BAD DAYS ARE LIKE THIS

    Woman shares about her struggles with chronic pain, including taboo topics.

    Source: 5 Things I Don’t Admit on Bad Pain Days | The Mighty