When you have a chronic condition, there can often be pressure that one needs to always be positive. Read why this author is breaking that stigma around her conditions.
THIS IS WHAT TIRED MEANS
The Mighty community with chronic illness shares what they mean when they say “I’m tired.”
This was the brief we had for our LG’s home learning the other weekend. Being 4 she doesn’t have compulsory homework, just topics of study that we can expand on at home. Her number recognition is improving dramatically but most of all having regular things to talk about is helping her to see the world.
We decided to do this piece of work that we would go for a walk around the block. We got my scooter out and went for a walk. No more than about a mile I would say. We looked at numbers on lampposts, houses, business signs and so on. We spoke about the 20 and 30 mph signs and what they mean.
What should have been a really fun hour for my LG and me, unfortunately became a frustrating trip out. It was Sunday so the roads were relatively quiet and there was no school traffic. You’d think this would have made the trip pleasant. Unfortunately we spent much of it doubling back on ourselves and walking in the road due to inconsiderate parking and dog poo. When you are meant to be looking at the world around you and the numbers everywhere it is tricky when you are staring at the pavement dodging poo or in the road carefully holding hands making sure a 4year old is safe as people had parked blocking the pavement.
It is perhaps telling that the number of pavement obstructions in the short walk was 26. Cars parked so you could not pass them on the pavement and dropped kerbs blocked were the biggest issues. It’s funny we all take our dropped kerb for access for granted. We sometimes forget that this also allows others a place to cross. Without them wheelchairs, mobility scooters and pushchairs cannot cross the road. We’ve all been guilty of saying to guests just block us in when you get here, but when you think about it this creates huge issues for others. I guess we all just need to think of others a bit more. I know I do when I park now and my friends and family do the same. Little by little change is happening.
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.
- 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.
- 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…..
- 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
Stephen Fratello describes several behaviors of family or friends that can be hurtful to their loved ones with chronic illnesses or disabilities.
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.
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.