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.
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There are many things in this world that frustrate me as a disabled person, but I have to say some of the most frustrating things have nothing to do with my disability and more because I am a stay at home dad.
This pathway, or lifestyle choice has been partially chosen due to my disability getting worse but it was always the plan of ours that my wife would return to work full-time. After all she has spent a decade earning 2 degrees to do her job. Out of all the jobs I have done I expected being a daddy would be the hardest but most fulfilling one I’ve had. So far it isn’t failing to live up to my expectations with one small exception, breaking into the mummy world, mum’s mornings, mumsnet, mummy social and any other number of “mummy” experiences. I get frustrated at the amount of times I see posters with these on, or events run for stay at home mums, or mums that make and so on, I really do get the need for bonding and ensuring that new mums have support but dads do too, and there is no rule book that I’ve seen that says that support has to be mutually exclusive.
Don’t get me wrong I speak to, and have, I think, made friends with a number of the parents in the playground. I am lucky that some went to school with me and some know my nieces so I’ve had insider trading if you like into this murky world. I’m yet to be fully invited or initiated or whatever rites of passage I need to undertake to be officially accepted in to the playground world of mums. Why I here you cry would I want in……. Well quite simply it’s because I don’t want my LG to miss out on play dates, having friends over and in the future after school groups, sports, playing, sleepovers etc.
I get that after giving birth hormones are all over the place and there are mummy groups, I also understand why a daddy isn’t welcomed with open arms at these. I mean I openly admit I have no interest in debating the breast/bottle and I have no experience in being able to encourage other mums in the latest techniques. Nor can I sit and discuss degree tears or pelvic floor exercises (I have a niece and sister who are midwives so I understand the terms and I do have qualifications in fitness and exercise so I could teach pelvic floor techniques so I could do both) it is a world where a man is not welcome and I understand this. Unfortunately it is also where new friendships are formed. I missed out on baby massage when my LG was young, I missed out on many other classes and although most have been rebranded parent and toddler the world of acceptance is a funny one and these remain predominantly female. The friendships from these groups mean that the playground dynamics are already set and trying to infiltrate them are harder than being an MI6 agent. Mum’s go out regularly together and as a dad these invites do not extend to me. There are other dads in the playground but by the dynamics we say Hi but little more.
In a world where we are fighting for equal pay and equal rights it remains curious that we have not made significant changes in the playground and the world of equality here is certainly reversed, it is very much a mummy dominated place even though more and more dads, grandparents and childminders become ever present. We sometimes focus on the repression all the time that we miss other things go staring us in the face.
The friendship and bonds for many have already been made at playgroups or older siblings and it makes new member entry limited. It cuts down the number of play dates I have been invited on I am sure. People don’t want a strange man entering their homes, similarly you wouldn’t trust the care of your child into that of a strange man, but the friends made over years of groups is different for them and the world of mums. They don’t worry about others looking after their children Maybe having a LG I too subconsciously have been more aware of this. I mean our friends have left sons with me, I’ve looked after my nieces, I’m confident I can look after other people’s children. However my LG’s friends only see me for a few minutes each day, how do they judge if I am capable of looking after their child. All I know is that as the main carer for our LG I want her to grow up experiencing as many things as possible, I want her to be strong, independent and focused, I want her to be caring and understanding and to live her life and love with all her heart. Even though I know this can lead to hurt.
I worry however that the inequality at the school gates will hold her back. It isn’t however being disabled that is what holds her back, it is being male. I’ll talk to most people I have a laugh with many parents I just feel I missed out on the opportunity to bond with other parents so that they can entrust their children into my care.
I have watched a good friend filming the Unison women’s conference this past week and have been amazed at how far we are yet to come but also how many amazing people there are out there fighting to make a difference, to improve the world we share. I can’t however help but think they are preaching to the converted and the message needs to go further afield. We need to start looking at everyone as individuals capable of achieving anything. World Book Day is coming up and my little girl want to be Peter Pan, well is going to be Peter Pan and already she’s been told he’s a boy, and she should be Tinkerbell. I’ve told her I’m happy she’s Peter Pan, but worryingly these inequalities, these gender stereotypes are being introduced at a very young age and it is not made any easier if you do not fit the norm to a society established decades ago.
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