Mum’s the word

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. 

First Bus response to Supreme Court ruling ‘treats disabled people with contempt’

A bus company forced to change its policies after a ground-breaking Supreme Court access case has been accused of treating disabled peple and the legal system with contempt, after it revealed the m…

Source: First Bus response to Supreme Court ruling ‘treats disabled people with contempt’

Landmark victories or more red tape?

This past few weeks have been very busy for the courts, for disabled campaigners, for disabled people and for the various committees, government departments, ministers, and those tasked with protecting the rights of some of the most vulnerable in society. They are all there with the goal of supposedly allowing us the opportunity of integrating into society and allowing us to enjoy some form of independence, some form of enjoyment, sport, cinema trips, theatre, even a simple trip to the park with family. The reality is none of this is simple there is a huge national campaign for #changingplaces and these are desperately needed so that disabled persons are not changed on floors, buses and trains are inaccessible and require forward planning, booking of assistance and numerous other things. There is rarely the opportunity for a disabled person to wake up see the sun is changing unexpectedly and deciding there and then they are going out. I watched a you tube clip recently that had someone using a go pro to show what it was like taking their child to the toilet on the odd occasion they treat them to a day out. some 30 minutes later and a trek into a shopping centre they return.

Now this isn’t meant to be a woe is me post, the reality is I have it so much better than some, although so much worse than others but it is about making the most of what you have. It is difficult to do this when there are so many barriers in place. I hope to one day watch a high standard football match live again, although locally the opportunity due to a lack of facilities and the seating arrangements/shortage of spaces etc make it impossible. I cannot remember the last time we went out without google searching facilities, parking, access, contacting the place to discuss what is there, what else is nearby and so on. I just can’t help but feel that every time a new article like the ones below come out, and judgements like today come out (that are so woolly in the details) that although they are considered victories I can’t help but think it just means more red tape is created, more training is then required to give people the skills to do what is needed of them and funding isn’t available, more hoops are placed in front of people who in my experience truly do want to help it is when you go up the food chain, see the financial “burden” it will place on the company and out it goes. Nevermind the financial burden I place on my family, it is good that as people they didn’t decide that I wasn’t needed.

I want to be positive about them, I want to think that good will come from people revealing how embarrassed they were when they were forced to soil themselves or they blog about trashed wheelchairs. I want people to stop putting a price on what is right to help other human beings, assistive technology is out there, yes it is expensive but what price freedom and independence? Many of the owners of the companies that make millions claim they cannot afford to really? Even the simple blue badge bays are amazing for us to do simple things like shop. These are not really monitored by the shops/car park operators indeed I even had a person recently say to me there’s nothing we can do about it if people park there. I have two issues with that one – why would anyone take up a space of a blue badge holder if they do not have a blue badge, it is selfish and lazy, and two why can’t companies do something about it. In a supermarket repeatedly say over the loud speaker system about the car being parked there, embarrass them into moving it, stop thinking about profits and start thinking about disabled people. If you see someone park in them challenge them politely as a disabled person I have forgotten to put my badge in and I would not be offended if someone reminded me, nor would I be bothered if someone working in the shops asked to see the photo to see if the right person was present when the badge is being used. The system does get abused embarrass those too. I can’t believe clubs like Liverpool and all their millionaire stars who like the positive photos going to hospitals and so on cannot get the facilities right at their stadiums!

I hope you enjoy some of the articles attached, and I know that I am proud of people like Doug Paulley who take on the companies and challenge the systems and win these rulings for us all, I can’t help but think the system itself is broken though when everything has to be fought for!

Disabled Access: Premier League Clubs Could Face Sanctions

Wheelchair v Buggy Supreme Court Case

No guarantee of help for disabled passengers

Paralympian forced to wet herself on train

Chronic Fear

Living life with chronic pain, there are many things that we wish the world knew.

Like how hard it is to simply work up enough strength to shower, shave or even go to the toilet. How difficult it is to make our own food and that we need help and support to dry and dress ourselves. Or the reason we’re so forgetful is because the pain took away our ability to remember a long time ago, that I know sounds strange but the pain becomes all consuming meaning it is hard to remember anything but the pain. Important days become blurs and if you are lucky enough like me to be able to use a camera you take hundreds of photos on days out so you can look back at them and remember them. Or that we lie about how we’re really feeling when you ask because it’s easier than explaining, watching your face fill with sympathy or worse still the eye rolling not again looks that crush the spark we have. We fear social exclusion because we do not have many spoons so what we once took for granted becomes like running a marathon to us. A few hours out is exhausting and has to be well planned and prepared for both before and after the event. We know how hard it is to accommodate our needs and so we become a burden on days out cutting down where people can go and what they can do so we stop being asked.

We could tell you how often we cry ourselves to sleep. Or that we feel like we’ve become sideline spectators in our own lives. Or the reason we nap as often as we can is because it’s the only way we can escape from what has become our reality, and the pain and medication mixes to make our bodies shut down to escape the world.

But what we hide deepest inside ourselves and even try to hide it from our loved ones, mostly because it’s hard enough to admit it to ourselves, is this: we are terrified. We do not want to add to the stress of our family who already do so much for us; so we try and protect from everyone the real fear inside.

We’re terrified because our bodies are failing us in ways even we don’t understand. We’re terrified of the mundane because we know we can’t always keep up, and at some point we will fall. We’re terrified that every morning we wake up, we won’t know whether our pain will be manageable or unbearable. We’re terrified that people will see how truly fragile we are. We want so badly to be normal, but we’re so terrified of normal because we’ve forgotten what normal is. The Chronic Roller Coaster never stops, there is no getting off, or resting, there is the occasional break down when we fall over or our bodies give in but other than that it is round and round and pain and pain.

Top five representative toys for Christmas — Scope | Disability forum

So pleased that toys are becoming more inclusive in their design and play, and that this results in spreading disability awareness to more and more. It will perhaps come as no surprise to hear that an inclusive disability awareness toy will be in my LG’s stocking this year

Can you give the gift of disability awareness for Christmas?

Source: Top five representative toys for Christmas — Scope | Disability forum

But daddy, I don’t want to make you poorly

…….is a phrase I have heard several times this last week, my LG has had a cough and cold and she has had several spikes in her temperature as her body tries to fight off the virus that so many of us pick up this time of year.

There is not much you can do but comfort a toddler, let them eat what they want, encourage them to drink and be there for them to cuddle. It is the first time that she really has been ill, and so the aches and pains are all new to her and difficult to understand. As her daddy I want to be there for her, to cuddle and hold her and tell her it will all be alright.

Several times however my LG has pushed me away and says to me that she doesn’t want to make me ill. Very sweet and caring, but it goes a little further than that.I said to her it is ok, if I am going to get it I will, do not worry give me cuddle and it will be ok. My LG however responded with “but I don’t want to hurt your back and make you worse daddy”

As I have chronic back pain as part of my disability she has heard me say how much coughing hurts and that I always try and keep myself away from people who have a cough. The reality is that you cannot avoid everything I know this, but she doesn’t and bless her even in her own pain and illness she is still caring about me.

With a new found mindset I am now proud of her reacting like this instead of feeling like a burden to her. I accept that I am in pain and my LG understands, helps, cares, pushes my wheelchair and is proud of me, and I am proud of her. Did it tug on my heart strings? – of course it did, did I fleetingly feel guilty? – of course I did, but I cuddled her, I reassured her that it was OK and that I didn’t mind and it was more important for her to concentrate on getting better. I know I am helping to raise a very beautiful, caring and well rounded LG and that makes me very happy.

Tourism and Disability 

I recently gave an interview to a local reporter highlighting some of the issues that disabled people face when trying to book holidays and plan days out etc. I shared the online article a few days ago however a friend popped the original story from the newspaper through my door this week and it gives some more of the quotes and highlights some more issues and problems. 

This can be further highlighted following on from today’s lunch. We were taking our LG to see Father Christmas this afternoon and since it was a bit of a trek that clashed with numerous medicine times we decided to have lunch before. We used good ol’ Google to find some places and I went through the usual rigmarole of phoning and emailing to make sure they were accessible. We settled on one place who said apart from a small step in which can get a wheelchair up easily it was fine. We arrived and the 3 disabled parking spaces put the front were full of 4 cars parked across the hatching (3 of which had no blue badges on display). My wife popped in to let them know of the problem the solution to them was to drop the disabled person off and they then gave her a pass for a nearby car park. One slight problem the disabled person was driving! Thanks to the motability scheme and some fantastic adaptations many disabled people can drive now! 

I managed to abandon my car opposite the hotel outside a home being worked on and we crossed over the road and on to the path. Then we had to back up and go back on to the road. The entrance had some lovely wide doors unfortunately they were at the top of two steps. Luckily with the aid of two crutches and two family members I was able to get up these steps. We got indoors and we had a further 2 steps (pictured below) to negotiate to get to our table. Talk about disappointed 😞 the problem was the staff have seen some people in wheelchairs negotiate these steps quite easily for me not so. By the time we sat down to eat I was sweating buckets and in incredible pain. I then had to hold onto the need to go to the toilet as there was no disable toilet. 

Now I have resisted naming the eatery as I believe it was ignorance that led them to say they were accessible, the staff were lovely and helpful and helped me in and out, and have no control over those abusing the blue badge bays and the food was very good. I do however wish they’d said we’re an old listed building and so there are these issues. I could have compensated with extra meds and so on or found somewhere more suitable. I will be emailing them giving them ideas as to how they can improve their access and be more open in the future. I understand that old listed buildings cannot make doors wider etc and accept it to a certain extent. It is however these sorts of issues that make planning holidays, trips etc so complicated. It is also why access groups are an important resource!