I have recently embraced the 300mph life in the social media fast lane of twitter! Generally, I have to say that I am really enjoying it (the hilarious gifs and sarcastic tweets are just brilliant) but recently I have seen the ugly side of social media on there.
I am used to trolls and have written in the past about dealing with them. I have regular comments and private messages on my Instagram account calling my son some truly horrific names and saying things like “he should be killed with fire” (yes, I’m sure their mothers are proud) but never on Instagram have I been accused of ableism.
Wiki defines ableism as
Ableism is discrimination and social prejudice against people with disabilities. Ableism characterizes persons as defined by their disabilities and as inferior to the non-disabled.
Never once have I felt that Harry is inferior to Oliver or anyone else for that matter but suddenly, with so many vicious tweets and comments (one woman tweeted that I was abusing my son – yes, I did discuss liable and police action), I found myself doubting everything I was writing and wondering if in fact I was an ableist in denial. I’m sure the individuals who hounded me will be thrilled to know that. There were a few points that were made about me on TwAtter (not a typo) which I have spent the last week or so considering and so I thought I would share my musings on what was said and how that will affect me, my self-perception and my blog moving forwards.
I am not autistic myself and as such, am not qualified to have an opinion.
I do get this actually. I have no way of knowing and therefore being able to describe what life is like to live with autism personally but I never claimed that’s what I was trying to do. My post was written from a mother’s perspective on living with a child with autism in the same way that someone may write about how hard it is to live with their parent’s dementia, or a loved one’s cancer. These are not always easy relationships despite the incredible love we have for those we care for and I honestly don’t think it helps anyone to pretend that they are. Yet no one is accusing people writing these blogs of discrimination. I am a parent living a life which is different to others – better in some ways, harder in others and that alone entitles me to share my experiences because someone somewhere needs to know that its ok not to always be ok with the cards they have been dealt. That’s being a realist.
I use ableist language that is patronising and condescending.
I call Harry my ‘eternal boy’. Personally, I love calling him that because it encapsulates everything about him that is innocent and beautiful. It doesn’t mean that I will be trying to put him on a potty or breast feed him aged 24. I was shocked at the outrage that this phrase generated. Having said that, I am more than happy to talk with people who can hold a rational, decent conversation and explain how the language I use is discriminatory. I am always open to learning and let’s face it, life without disability is a learning curve let alone with. I have seen some really great articles on the way that language can be offensive and actually it has made me think about a few things differently which I think is always a positive. However, even within the ‘evidence’ for ableism language I have struggled. One site quotes the following words as ableist which I agree with “psycho” “retarded” “spaz”. But on the same list is ‘deaf’ and ‘blind’. I am sorry but I believe these are medial terms which describe physical conditions where there is no hearing or sight. I fail to see how these are discriminatory. As I say, I am more than happy to discuss ableism language but I do think the criteria needs to be clearer. Until then, I will happily call Harry my eternal boy and feel very privileged to share the world with him.
My son would be ashamed to think that I wished he was neurotypical.
I had no idea that Harry would be born with Goldenhar syndrome and I am not ashamed to say that I didn’t cope well with the news that one of my healthy twin boys (according to lots of scans) would be facing challenges throughout his life. As much as I adore the bones of my boy now as I am positive every parent of SEND children does, never, not once, did I watch that scan monitor and hope that the sonographer would tell me that my baby had goldenhar, or down syndrome, or osteogenesis imperfecta. I would argue with anyone who says that there are parents who hope and pray for that outcome. Did I want a child with special needs when I was pregnant? No. Would I change him now, yes some days but I would also change aspects of Oliver and my partner Andrew and I have absolutely no doubt that they would change aspects of me. It’s impossible to know where a disability ends and a personality begins. Does this make us personist? Struggling with a disability or condition is not the same as wanting to change your child because if our children were to change then they simply wouldn’t be the children we know and love. I love my children because of who they are, not in spite of.
Attitudes like mine are the problem in society, not disability.
Harry is 12 years old now but cognitively he has been assessed as functioning around 3 years old with a language of 18 months. Yes, I have said that I don’t know if he will ever have a job or a girl friend. I don’t say this because I have written him off for life. I say this because I genuinely don’t know, and neither do the people who criticise me for saying it. They can’t assure me that Harry will live independently, enjoy a job and go on to have a girlfriend and family. I hope and pray that he will because one day I will die and I want to know that he will be living as full a life as possible. I do realise though that there is still a huge stigma around disability and some very outdated attitudes which don’t help anyone but I truly don’t feel that mine is one of them.
I cannot speak for my son, he is his own person.
Harry is non-verbal and as such I do represent his voice in many ways. One ableist champion explained their view that Harry has his own thoughts and feelings and as such, this makes me his interpreter and not his voice. I get that and I think that’s true in many ways too. (Note here – constructive feedback is much more likely to get people thinking than blatant abuse). Harry is his own person and wherever I can I give him the choice I do but there are some decisions that I simply have to make for him. He was unable to tell me why he was getting distressed when he went into key stage 2 at school and so I had to use my best deductive skills and go into school to address it with staff. If I wasn’t his voice on that occasion, he would have had an awful time for the rest of his primary education. He couldn’t choose which high school he liked enough to spend the next 8 years at and so me and his Dad made that decision based on what we know about our boy and which setting we believed would help him achieve the most. Should I have given him a coin to toss instead? In contrast, Harry was able to tell me which school shoes he preferred last August and they absolutely were not the ones I wanted to buy for him. So guess what I did? I bought the shoes he chose. Shocking, I know.
I never deny Harry his opinion if he is able to share it and when he can’t I don’t make any decisions lightly. I also recognise that everyone is unique and individual and as much as I admit that I can’t speak for Harry at all times, I also think that those who are talking on behalf of ‘all disabled/ autistic/ sen people’ might need to realise that they can’t do that either (not without being incredibly hypocritical).
So what am I then?
So, after all this consideration I came to the decision that while I have never intended to express myself in an abelist way, there may be times when I have used language that might offend some. I don’t think this makes me someone who ‘characterises a person by their disabilities and as inferior to the non-disabled’ though.
I also know that in voicing the worries, fears and natural emotions of having an altered life as I have, I have made a huge difference to the people who are feeling exactly the same but daren’t speak out for fear of being vilified. To know that my honesty helps someone else realise that an altered life is still a brilliant one means the world to me because that’s what I wanted right at the start of my journey. And if I have to be labelled an ableist by some to achieve that then I’m just going to have to accept that sometimes grown-ups have to agree to disagree.
I got thinking about all the places I have been and the people I have known throughout my life. The multicultural school I loved working in, the rich ethnic backgrounds of the people I know and feel privileged to learn so much about cultures I’ve not experienced first-hand, the other disabled children and their families who I have met and formed friendships with.
My conclusion is this – I am not ableist. Nor am I racist, sexist, ageist or sizeist.
However, I am twatist. Regardless of your skin colour, background, age, ability level, cognitive functioning level or the colour of your car, if you are a twat who takes it upon themselves to harass and belittle others simply because you feel that you are right to do so and they are wrong, then we can’t be friends. Not at all. I am twatist and proud and will be raising my children to be the same although probably with a different title – I might call it something like common decency.
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There are some truly ignorant people around, having read posts that you have posted it is clearly obvious that you are not ableist and that you treat both your boys who you clearly adore exactly the same. Take no notice of the ignorant people who do not know you I am lucky as I not only follow you on Facebook but have had the privilege f meeting you and getting to know you and how much you care for both your boys xxx
Thanks so much Julia. C xx
Great article, these terms are being thrown around inappropriately. It’s awful to be called ableist, prejudiced, racist or sexist when someone is absolutely 100 % not those things.
Yes the viewpoints of people with disabilities can give nts useful perspectives but there’s no need to descend into labelling (name-calling essentially), fantastic parents like you are not the enemy. Well done on providing as loving, positive environment for your sons.
Thanks so much Fiona! Cx
Charlie, you are amazing. An amazing mum, and great writer and you shed light on how it really is for parents to deal with a child with a disability. It’s raw and hard and rewarding all at the same time. Haters will always hate ( you know this) because they have nothing better to do that see negative. You though. You are positive and upbeat and honest. Never stop that!
Thanks so much Renee. I really appreciate your lovely words and will definitely continue doing what I’m doing. I live in the hope that for every 1 person who has a problem with my posts, there are many more who take value from it. Thanks for your comment. C x
Bloody hell, I don’t remember being able to choose my own shoes when I was 12
He’s a lucky boy! 🙂
I’ve just found your blog in the wee hours of the night while nursing my baby girl. I’ve read a couple posts and after reading this one feel I must share my heart with you. Some people in the world…… I would encourage you to continue your ‘twatist’ behaviour, and do not give second thought to haters on twitter or any other social media. It is clear after only two of your posts that you are hugely self aware. That you stop and ask yourself ‘what is the consequence of my actions, and how does that affect those around me’. This is clear evidence of your self awareness, and with great self awareness you also have the ability to be greatly aware for your son who cannot always speak for himself. That is beautiful! That is love! You are doing an amazing job! Continue spreading your light and love in the world darling!
Thank you so much for taking the time to read my blogs and your lovely words. It really means a lot to me to have support and I hope that my word help others who may be struggling or coming to terms with an altered life too. C x
It’s a cheek when the society that doesn’t accept our children then tries to tell us how to parent them. Everybody has an opinion and they are entitled to it. Until you have lived every day caring for someone that society so casually rejects or patronises, you can feel free to keep that opinion to yourself, I believe.
I think I may be a twatist, too. Thank you for giving me the word to express who I am.
Im totally with you and you are welcome. I think I have a long way to go before ‘twatist’ appears in the dictionary but I definitely think it deserves a place! C x
You carry on as you are. Some people have a massive chip on their shoulder and go out on social media to find offense. As I’ve discovered on twitter, no matter what you do, some people will try to pick a fight with you. There’s is a sad, angry world were nobody could ever match up to their standards or virtue signalling.
The worst thing is, they usually do all the same things as they rail against. In your case they are putting words in your mouth and denying you a voice about your experiences with people you love and they know nothing about.
I absolutely agree Adam. Thanks loads for reading the blog and taking the time to comment C x
I was in an auto accident almost 4 years ago. I am now permanently disabled. I know people with autism, some at our church and some where I go to therapy. To me, they are all beautiful. They are not monsters, they should not be killed, and they are definitely not ugly. Don’t pay any attention to the ignorant people out there Charlie. You are truly a great Mom, you should be proud of yourself! You are also a great writer, keep it up. I think Harry is a beautiful boy!!!
Thanks so much for your comment Dave. I really appreciate it. Wishing you all the best C x
I read your story – and I have to say – no disability that I see! Look at that incredible smile!! I bet his smile lights up every place and person he contacts!! It brightened my day. May God bless all of you !
Honestly, everyone who meets him falls in love with him. Hes amazing. Thanks for your comment C x
I read you and Harry’s story on Fox news just a little while ago. I think it was wrong of Instagram to take the photo off. Harry is a beautiful kid and you seem like a great mother. We need more parents like you in this world, After reading a few of your blogs and seeing pictures it’s clear you really love your boy(both of em). You are a great writer and your words come straight from your heart.
You inspired me tonight. Thank you.
Hi Nick, thanks so much for taking the time to read my blogs and leave such a lovely comment. I really appreciate it! C x
Reading this made me confused on what I say and if it’s ablest or not. Like you, I would think words such as blind describe a medical condition and not ableism?
I also understand in that we too have to be the voice of our son. We all have hopes of what they will be when they grow up, but then at the same time this is an unknown. So we can’t know if they will have jobs, partners and so on.
There was some great info and thoughts in this post. I truly enjoyed reading it
Hi Sean. I’m really glad you enjoyed it and made you think. I certainly had some reflective time after all the accusations were flying. But I think we are doing our best and loving our children completely. Thats more than some parents manage! C x
Great story, great people!!
Thank you 🙂
I didn’t know of you all until just now. I looked at your sons and thought wow you can see they are brothers, I read on – duh – twins!! I hadn’t heard of ableism until today either. I keep re-reading the definition but I still can’t really digest it. Possibly as I still have one child out of 3 awake! It is evident from your writing that above all else you are a mother who loves her sons. As my mum would say, don’t let the b******s get you down. Or in this case t***s 😉
Hahaha that was one of my aunties favourite sayings too. Thanks for reading the blog and taking the time to comment! I really appreciate it. C x
Loved reading this! Hold your head up high your doing a fab job being a mum and keeping it real at the same time. You can never please everyone unfortunately. Love and hugs to you and your beautiful family x
Thanks so much Carrie-Ann. You’re right, you cant please everyone all of the time so you just need to make sure that you are doing the best thing for your own family. C x
I have to say that I only follow your blog and Twitter account because of the very real love and affection you demonstrate in your commentary on Harry and the rest of the family for that matter. For me, you speak a mother’s truth, particularly here in this blog entry. As I read it there is a sentiment that resonates with me and my own experience of motherhood. My son does not have a condition and is therefore classed as ‘normal’ – whatever that means… but our experiences of motherhood regardless of our children’s differences and individual challenges should have a place… we should be able to have a voice and share it without fear of judgment. As you say in your blog, we are open to learning how to do this more effectively but our personal experiences should not be shut down by those who misread and find fault to easily. Continue to speak from your heart and give the rest of us courage and affirmation. Harry and Oliver are as blessed to have you as their mother as you are blessed with them.
Thanks so much Gemma. You are so right! Cx
I love reading your blog and instagram, it’s clear your boys are so lovely and you’re doing an amazing job! Unfortunately there are some awful, negative people out there that quite frankly don’t deserve any attention!
My partner has goldenhar syndrome and I am in awe of the stories his dad tells about when he was young and everything he faced. He inspires me every day, just like I’m sure both of your boys do for you!
Its lovely to hear from everyone who enjoys the blog but I am always touched by those whose lives have been touched by Goldenhar. Im thrilled that your partner has found someone as lovely as you and wish you both every happiness C xx
Thank god for moms like you, I know most moms think they would step up to the plate in any situation but, having been a foster parent, you deserve praise. Don’t let the Trolls get you down unfortunately they are everywhere. I came too twitter so I could weed out the negative and find more positive and your blog is one that I really enjoy. Thank you and keep typing Bruce
Thanks so much Bruce. I hope you stay with us and continue to find reasons to smile and even laugh as I share our journey C x
Every time I see a picture of harry giving you a kiss I can feel his love and how he trust in you.
This is the prove how beautiful and true are your work and love for him.
bless you all.
(sorry my bad english.)
Many thanks! He really is a beautiful boy inside and out 🙂
Yes! This! I’ve been thinking about writing a post about ableism for a while but haven’t quite found the right words. Nodding along here with you!
Im disabled, and I have Aspergers. I don’t find you ableist… I find you a mom, loving, worried, fierce, defending her child not because he is well, unwell, disabled, or not, but because he needs her defence in a clueless, cruel and petty world. I enjoy reading about your life because you are so honest. Excellent article, and the only thing you should change is your willingness to even remotely consider these petty minded people credible. Hugs, thank you… and our love to both of your beautiful boys (from me and my Assistance Dog, she’s the neurotypical one between us).
Thank you so very much. That means a lot to me after the accusations! Much love to you and your companion C x
Thank you for another challenging blog. Twatter does give people the chance to ‘prove’ their self righteous superiority over everyone else. Your posts describe the unconditional love of a parent to her children which is far more powerful.
Don’t know if anyone will see or read this, but there is a reason why disabled people people seem “awful” and “negative” as well as “trolls” to ableds, is because disabled people are fed up and exhausted with the amount of ableism they have to face daily and it doesn’t help when abled parents especially (as well as doctors), are putting out inauthentic info on what they think it’s like to be disabled! It also is frustrating when many abled parents refuse to listen to #ActuallyAutistic people! To add onto that frustration, this inauthentic info put out by abled parents voices is unfortunately silencing voices that come from disabled and #ActuallyAutistic people… Inauthentic representation/info can also be quite dangerous for disabled people who also have mental health conditions, as the suicide rate is higher for disabled and autistic people! Social media and online is also unfortunately the only way that disabled people can get their voices herd! As many disabled people often don’t have the “spoons” to go out and protest/march unlike black lives matter and pride month (also fun fact: there is also a disability pride month and a autistic pride day!). Also one other thing you could of added was changing the language you use, as I have noticed that you say “special needs”, many disabled people want this to be phased out, because it is infantilizing and is actually a euphemism, it also doesn’t see disabled people’s needs as rights and “others” disabled people, disabled also isn’t a bad word! As an autistic person myself, I despise the term “special needs” with a passion! This is why we need to be amplifying autistic and disabled voices so then disabled won’t be as annoyed with abled parents as they are now! Good for you though that you are deciding to confront and unpack your ableism though!