My son is disabled. It is just a fact of life. He had a stroke and although this is awful, we don’t let it determine the way we live our lives. Of course there is an impact, but we don’t let it control our life, in fact I think it has enriched our lives in a lot of ways. We have experienced so many beautiful events and people that I feel have blessed us in so many unique ways. There are moments in life that are a bit harder, I am not going to lie. Whether it is having to find somewhere clean to change your disabled child when most places don’t have adequate facilities, or having to deal with people staring or making really cruel comments. Although I don’t like to focus on the negativity, I feel it is important to discuss some of the things that make it harder as well as the aspects that make it all worthwhile.
I got inspired to write this post by a new report on the BBC this morning – http://www.bbc.co.uk/news/uk-41600137. It’s titled ‘ Disabled children hate crime reports increasing’ and it details how children (yes children!) faced with prejudiced and despicable acts of hate. I would like to say that this is not common, and in my experience it is not. This article focuses on one family who has a 23 month old daughter who ‘has hydrocephalus, or water on the brain, which causes her head to swell. It means at one point Lydia’s head was double its natural size. She also has cerebral palsy and is fed through a tube.’. Before we had J I would have thought it impossible that anyone could victimise a baby – a vulnerable, innocent child who can’t defend themselves. It is unconscionable to think any human being can do this, yet it happens more often than you think. The article states:
Overall the number of disability hate crimes increased by 101%, from 1,531 in 2014-15, to 3,079 in 2016-17.
3079 cases of disability hate crime is one year! This is a shocking statistic for most, however I don’t find it surprising. Why? Because we have experienced it ourselves on a number of occasions. It may not be as bad as some, but it can still hurt.
When our son was born it was the most amazing event of our lives. He was diagnosed with having had a stroke a few days after birth and with epilepsy a few months later. It was a traumatic time in our lives, but we have a great life. It is full of love, fun and laughter the majority of time. He has overcome so many obstacles so far. We were told he wouldn’t walk, or talk, or do very much at all. He does have trouble walking so he uses a wheelchair when he can’t walk. He does have trouble with his communication and he is hard to understand. He has gone through long periods of selective mutism which impacts on his education. He has uncontrolled epilepsy which means he will need surgery at some point soon. Do you know what though, he still smiles through it all. He plays with his sister all the time, he makes our family so rich with love and experiences, I could only hope every family has a son as wonderful and as strong and determined as him. You can tell – I am quite taken with him. Just like any father would be. I would honestly give my life for him. If I could have had the stroke instead, I would have. My wife says the same. We can’t change that, and we wouldn’t change him for the world. Yes, we would like him to have it easier, but that’s life. You can’t change it. However, I think we need to educate people better about disability and difference. Hate crimes are avoidable through education. I don’t just mean at school either. We are educated every day – by our experiences; our interactions with different people, cultures and communities; by our parents and family, even by the people who we don’t get on with. We all need to learn acceptance of difference and disability. It’s easy for me to say I know, but it is our unique differences that make us interesting and worthwhile.
I was going to write this post a while ago but didn’t get round to it until reading that article today. It reminded me of a situation I dealt with last week whilst visiting our local Tesco Cafe. My son was getting over a ten day illness and my mother and I decided it would be nice to get J out for a well deserved treat. It was also one for myself as I was a dishevelled, knackered, exhausted mess after a very long few days. Tesco cafe isn’t the most glamourous of treats, but it is one J is familiar with and enjoys. He doesn’t always like new places and we wanted him to feel comfortable. We are used to people staring. Seeing a child in a wheelchair isn’t uncommon but people tend to stare anyway. That’s not what bothers me. It is the looks of fear and occasional disgust. I just don’t get it. Unfortunately, many people can’t hide the feeling from their faces. For example, I know when I am on the wrong side of my wife – her face says it all, even if her words don’t. I imagine I am the same. Well, on this Tesco visit we had the usual stares. It was busy though and the cafe was rammed. So much so we had to try to squeeze through spaces to get J’s wheelchair to our seats. This is where we encountered the looks of disgust. Maybe, this was just out of inconvenience as we had to ask them to get past. Don’t get me wrong, most people are willing to move and are helpful, but there are enough people out there where this is not the case. Just one person can make you feel annoyed unfortunately. It’s not fair as it is not our, or his fault. We also had two young women come to sit behind us, J was sitting in his wheelchair, and that he was a bit messy because he was eating and this can be a little bit of a challenge for him – especially to stay relatively clean. Needless to say, they didn’t like this and made the most awful look at J and his wheelchair, mumbled a few comments under their breath and then decided to move to the other side of the cafe. I mean the other side as well. They couldn’t have moved further away. It upset my mother and I was annoyed, but I thought it better not to react. We have had this experience numerous times and I always find it a really strange event. I think it is ignorance and a lack of understanding. Most people who get to know my son find him to be awesome. I mean awesome! He is a little shy when he meets someone new but when he eventually comes round he is always smiling.
There is a positive to this story though.A big positive. I think it happened for a reason as well. I am a great believer in that. We met a lovely lady whose name evades me as I am writing this. She sat behind us and she gave us and J a nice big, welcoming smile as she came to sit down. Without warning she said ‘Hi’. Wow just wow, a stranger who is willing to say hi and smile! It came as a jolt. So often nowadays we live our lives without really impacting each other. I love saying good morning to people in the street and smiling – it is a great way to spread a bit of happiness, although it is sparsely reciprocated. She then asked if she could say hello to J. I couldn’t help but say yes. She came over and sat on a chair in front of J and told us to ignore the stares and spoke directly to J. The worried look on his face soon evaporated and a smile lit up his face. If I could have given her the Nobel peace prize there and then, I would have. What a wonderful lady! It is moments and encounters like these that give me hope. After a little conversation we learned that she had a son, older than J, who had autism, and that she loved speaking to children who were like him. In that moment she gave me hope that people are inherently good, and that experience teaches us to be kind to each other. She left us much happier than when we had sat down. The treat that we had was not the cakes or coffee that we had consumed, it was the chance encounter we had had with a like minded human being. I wish this sort of experience on everyone. It has stuck with me since it happened. It will definitely be something I will try to reproduce for someone else. It made our day!
The article also shone light on more vocal encounters, with people making direct comments either face to face or online. This is less common in my experience but still happens. I experienced it when my son was a lot younger and I was also with my daughter. It was an older lady in a supermarket. I know, I am there a lot – I could pitch a tent there, it would be easier and save petrol! An older lady came up to us and spoke to our 18 month old daughter. She said she was lovely and beautiful. What a lovely thing to say, I agree. However, when discussion turned to J, her face changed to horror. I was surprised, he looks like any normal child, if you didn’t know he had a stroke and was not in a wheelchair you wouldn’t guess that he was different in anyway. His wheelchair was obviously the problem as she decided to say ‘he’s not right is he!’, the disgust on her face was ‘HD’. I was in shock, I did not know how to respond to be honest. This sweet, little old lady had just sucker punched me. She carried on after that as well. She even followed us round the shop further clarifying how wrong he was!!! I had to tell her to go away. I honestly couldn’t believe it. People were looking on, not saying anything though, but looking on, interested in our exchange. This woman really opened my eyes to how some people can be unnecessarily cruel. My son was coming up three so hopefully he won’t remember it. I will, forever. I do forgive her ignorance, but I cannot forget how hurtful her comments were. I have told people about this situation and always get the same reaction of horror and disbelief. I could let these type of occurrences change the way we live our life, yet I will never let that happen. I know most people are kind, generous and accepting. I want to teach my kids that. We just need to educate and change the attitudes of people that have not yet learnt the nuances of accepting difference.
The latter part of the article states something really troubling:
Amanda Batten of the Disabled Children’s Partnership said the findings echo a new survey it carried out of nearly 2,700 parents of disabled children which revealed hate crime and abuse was commonplace.
“Families often feel like they can’t go into busy public spaces or post images onto social media for fear of being publicly shamed or having to be submitted to people telling them that their child must lack quality of life because of their disability.
“The idea that so many parents and children with a disability are facing such a lack of support and outright abuse from the general public is truly heart breaking.”
Not one person or family should feel that they can’t go into busy public spaces, or post pictures of their loved ones on social media. I write my blog as a way of keeping myself busy and productive whilst being a stay at home dad. There’s no agenda for me. I just wanted to write. I find it fun. However, with this topic I hope that it opens the eyes and the hearts of someone who finds it hard to accept difference. Having worked in a school for five years helping to educate teenagers, I have learnt that you have to open an honest conversation to really engage people about changing attitudes and preconceptions. I would be happy if only one person read this and that helped them understand. The next time you see a person who is different try to make a positive impact. If you stare, why not make it a positive experience for them – smile, start a conversation, say a simple hello. It makes a difference, trust me.
I am happy to say there is a campaign launched under the hashtag #secretlivesofus by the Disabled Children’s Partnership which aims to challenge and break the barriers that disabled children and their families face. You can sign up here http://bit.ly/2t590Yw if you want. You can follow them on twitter as well https://twitter.com/DCPcampaign .