My Daughter is NOT Disabled!

Disabled.

I hate that word. Not that there’s anything particularly wrong with it as a word in itself. It’s just that, when applied to people, it’s so negative and judgemental. I mean, is it just me? When did it become good and proper and acceptable to define people by what they can’t do, by what they’re not? We don’t apply that concept to any other section of society.

Here is a definition of the word ‘disabled’ according to the Oxford Dictionary;

(Of a person) having a physical or mental condition that limits their movements, senses, or activities.

Really? Is that all they are, persons limited by their conditions?

Ok, we know that children and adults like Carys are different from the majority, and we have to have a way of referring to them. Don’t we? Because we like labels; they make things nice and clear, and everyone knows where they stand.

Well, this may come as a bit of a surprise to some, but my daughter Carys is NOT disabled. I don’t define her by labels, especially not negative ones. She’s not a cripple because she’s in a wheelchair. She’s not a mute because she doesn’t talk. And she’s certainly not ‘slow’, or a retard because of her mental abilities.

The first time I heard the R-word applied to Carys, I was shocked. I had honestly never perceived her in that way since the day she was born. It shocked me even more that said assessment came from the mouth of a friend. The second time I heard it, I was better able to handle it. (In a firm but polite manner.) The R-word has been denounced and rejected by society, and rightly so.

I don’t like the term ‘special needs’ either. Her needs are not special, they are the same as everyone else’s, to love and be loved, to be nurtured, kept safe, have access to food and toys, a roof over her head, education, to be accepted.

I have heard people saying of her to their children, ‘We have to take care of Carys, she’s special.’ Well yes, she is, but no more special than all our children. I know this is meant well, but have you ever had to explain to your five year old why its Ok for a certain person in his class to pull his hair, because teacher said she (the person who did it) is ‘special’? I have. Not only is that wrong on the teacher’s part, but it is not an excuse for bad behaviour.

I define Carys by what she CAN do; in spite of all her challenges, she has overcome great suffering. She has learned to crawl and walk. She loves music and singing and dancing, and can actively partake. She has the most brilliant smile. She is cheeky and feisty, demanding at times. She laughs… a LOT. And oh, she has an infinite capacity to love.

She doesn’t judge people by the colour of their skin, how they look, what car they drive, or how big their house is. She doesn’t care about any of that. She willingly shares her food and toys. All she asks is a bit of attention, a full tummy, somewhere comfy to sleep, and as many hugs as you can spare.

What she has, is a rare syndrome. It’s called Cardiofaciocutaneous Syndrome. That is label enough. It’s completely true. It’s not insulting. It is a fact. It doesn’t make her special, just different. She’s not a victim of this syndrome, or a sufferer of it, or a patient. She is not impaired. She is not handicapped. It is simply something which is a part of her.

Here is a great quote;

The most appropriate label to use is usually the one given by  the parents.

In our case, that would be Carys. Carys is a Welsh name which comes from the word ‘love’ (cara’). I believe it is also very similar to a Greek word meaning ‘happy’ or ‘joy’ (περιχαρής / pericharí̱s). You can’t get more appropriate than that!

Carys, like all people with syndromes, is a human being, just like you and me. I think there are many so-called ‘normal’ people out there in the community who are far more disabled and non-functioning than Carys will ever be.

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33 thoughts on “My Daughter is NOT Disabled!

  1. WOW! That’s so well said, Ali. Bravo! I always say my kids (and I) are who we are DESPITE our autism, not because of it… and the same is true with your sweet Carys. And here’s something else your precious daughter is: a sweetheart! Please give her a great big hug from here in Florida, U.S.A. ❤

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  2. I suppose the crux of the matter is the word disabled labels everyone in the same box regardless of who they are as an individual person. Carys is your daughter, you love her, when she smiles that lights up your day, like any parent you just want what is best for her, and wish her every happiness and joy. That is all we can do as parents watch them thrive and grow, some may take considerably smaller steps than others, or may struggle to do things but it seems to me, that Carys’s happy smile speaks volumes that she has a good, gentle, heart and that is in my opinion the most important gift any human being can have. .

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  3. This post is something else ~ so clearly shows love but also absolute logic and need for the end of using such terms, and nothing better says it than your words: “I define Carys by what she CAN do”

    That simply may be the most beautiful sentence I’ve read. Wishing you all well ~

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  4. I am sure that there are many years of pain and hurt and frustration behind your feelings on this matter.

    I do not think of Carys as disabled at all. I do not know what the social norms in the U.K. are, but here in the U.S., I do not think that the term “disabled” necessarily has a negative connotation.

    We have the “Americans With Disabilities Act” which ensures that people with disabilities have access to businesses, public toilets, etc. Businesses are required to provide wide parking spaces near their entrances (called Handicapped Parking), ramps for wheelchairs if there are stairs at their entrance, doorways wide enough to accommodate wheelchairs, and doors that open automatically or with handles at wheelchair height.

    These special accommodations for people with disabilities ensure that they can go places freely in a dignified manner with as little difficulty as possible.

    People with disabilities include veterans injured in the service of their country, people injured in accidents, people with disabilities as a result of medical problems that occur later in life, and people born with disabilities.

    When you mentioned disabled people, the first person that came to my mind was a man named Noah Galloway who competed on the show “Dancing With The Stars.” He lost both his left arm and his left leg in an explosion when he was serving in the military. Yes, he was disabled, but that did not define him in any way. He danced his heart out and won the hearts of all of America. He used a prosthetic leg but no prosthetic arm. He was a beautiful man both physically and emotionally.

    So I guess what I am saying is that maybe the word “disabled” is not such a negative or judgmental word – at least in my opinion. People can become disabled due to many different things and it does not mean that we view them as less than a person or as defined strictly by their disability. It just means that we recognize that they have a disability, it is part of who they are, but it is not WHO they are.

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  5. All I kept thinking when I read your post Ali is of the times when my daughter has been told that because of having Asperger’s Syndrome, she is ‘special’ or has a ‘special gift’. This absolutely enrages her. Don’t they realise that by labelling her like this, they are setting her apart, placing her in a different place to the rest of us, making her feel even more isolated and alone in a society unfriendly and misunderstanding to Aspies as it is? She was told this once a woman at the Job Centre, who spoke to her in such a condescending way.
    My daughter blogs and hangs out in various online platforms, her social life is online. She tells me all that time that it is common practice to insult someone by calling them ‘autistic’. Anyone, who they also call a ‘retard’ is ‘autistic’. So the two words have become entwined and are used frequently.
    In a world that on the one hand strives to show more tolerance and understanding, there seems to be more vitriol and hatred than ever, especially online where cowards and sad sacks hide behind false facades to spout their filth..(sorry, took off on a bit of rant there…)
    But…how wonderful that your beautiful Carys (and I just love the meaning of her just as beautiful name) is embraced by and lives within the love and joy of her amazing Mum and family. Carys radiates this love of life and joy and what a very great blessing you are to each other ❤

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  6. I hate that term… it’s used to describe my wife’s condition as well as many others. I got recognised by our council as being disabled because of my hearing. Its derogatory in the worst possible way and makes one feel inferior inside. It’s bad enough to describe or name one’s condition so people may understand if and when the topic comes up, so why add the word disabled to it? Time to treat people as human beings as such and to remember that such things do affect their thoughts and feelings making them more vulnerable than they are to begin with. Such shame your little girl, Carys has to go through this.

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    1. Hi Kev, I just wanted to say, I’m sorry you had to go through that and I wish other people really understood how derrogatory it really is. When I was ten, I received an international award from the Council for Exceptional Children. I could not understand why I was receiving this award–after all, I never suspected that going to elementary school and doing my homework was exceptional, lol! But you know, there it was, so I happily allowed myself to be recognized as exceptional. Fast forward fifteen years when I realized (not sure where I was before this ? ) that “exceptional” is actually a term applied to people with disabilities. I’d been recognized for being an awesome kid who was totally blind. You know, I was exceptional for a blind kid. Ugggghhhhh. I actually cried. What devistated me was not finding out I wasn’t exceptional–that was a relief really :-)–but realizing I had never been recognized for who I was, only for what I was and the statistics I was challenging and the condition I had. This has to stop. Our access to having opportunities for happiness, employment, social contact, etc, etc, are not a matter of charity, but a matter of human rights; and if and when any of us are “exceptional” let us be so as human beings, not conditionally so, relative to our impairments.

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      1. That realisation must have had a huge impact upon you. Terrible. It does make one think. I can understand people not knowing better due to societal pressures and what is expected from the society we live in, but it’s up to those in positions of influence and authority to make things right by having insight to how such actions can affect people.

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  7. She’s not “dis” abled, “differently” abled, or “en” abled. She’s a beautiful, happy child with love to share and things to teach. I’d count myself lucky to be around her.

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  8. Sadly, we are a society of labels, and they do no one any good. They are hurtful and divisive. Carys is a beautiful little girl. I hear your anger in your post, and I agree with all you said. Hugs.

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  9. As someone who works with differently abled children in the public schools, even putting aside the larger questions of appropriate terminology for practical and professional purposes, I have had to get creative while considering not only legal privacy concerns, but also how to talk to children who ask questions about the little friends I work with. When typically developing peers ask me, as I walk down the hall alongside a student I work with, “what happened to him?” (or similar questions), I usually say something like, “Well, we all have things we need a little extra help with, right? He just needs a little help walking/saying what he needs/knowing what to do/etc.” I don’t tell them anything other than what they have observed, but I try to frame it in a way they can relate to, since often they have not met many children who are different in this particular way.

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  10. Carys is a bundle of joy who just work on a slightly different operating system to most of us.The function of the programming is a little off kilter. It doesn’t make you care for her any the less nor her care for you and that’s the bit in life that counts.
    xxx Mammoth Hugs xxx

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  11. Labels are the easy way out! They make everything black or white and it is so easy to forget there is a whole palette of colours in between.
    This is a beautiful post, Ali. And you are very right to be angry at any labelmakers (in a human form!)

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  12. Well said, Ali!

    I did my PhD thesis on this general area and it involved gathering the life histories of people with Cerebral Palsy, Multiple Sclerosis and Spinal Cord Injury.
    A lot of what propelled me to do the thesis was the labelling of ‘the disabled’ as if it was some kind of homogeneous group.
    I must say I think the notion of handicap challenges us most as it relates to the SOCIAL barriers that people face. Unfortunately, it has tended to be used in the same way as the R-word.

    It’s a good while ago since I wrote the thesis but the very lengthy interviews with the thirty people replay over and over in my mind and it is their individuality that shines through every single time.

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  13. Reblogged this on graemecummingdotnet and commented:
    For several years, I lost my identity. At least, I did at the school gates. I was no longer Graeme, I was Rachel’s dad, or Robert’s dad, and not just to my children’s friends, but to the other parents too.

    To be fair, that’s a situation that applies to most parents, and especially so the more involved you are in your children’s day to day lives. So we all get labelled at some point in our lives, whether it’s based on our children, our careers, our hobbies, our age, our sexuality, or our health.

    Very often, it’s easier to apply a label to someone than consider them as individuals. It helps us to slot them into a particular category. But the reality is that we’re all the sum of our parts – even the parts that are missing – so perhaps we just need to think about the person first. Because each one of us is special, and that’s because each one of us is different.

    Ali’s post here addresses gives us a very personal example.

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  14. I’m told I have special needs – but they’re probably not appropriate to broadcast before the watershed.

    Joking aside, the point is that, if we are going to attach labels, “special needs” and “disabled” never seem appropriate. We all have special needs at some points in our lives, and those needs might be just for a hug when we’re going through a bad time. And we all have disabilities. I have a complete disability, for example, to hammer a nail in a wall without creating havoc all around me and said structure. And don’t get me started on my lack of ability to maintain relationships.

    Even so, society (another label that means sweet Fanny Adams – I’ll leave the real swearing to Sue) seems to need a way of pigeon-holing people in much the same way as booksellers like to put you in genres. Sadly, nothing major is going to change any time soon. But, Ali, there is a growing minority like you who are making changes in themselves based on their own experiences and, by sharing them, you are increasing awareness. It isn’t going to happen overnight, and the ultimate shift may not happen in our lifetime, but keep it up. Progress is being made.

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  15. Never a truer word spoken, there are many disabled people out there – those who have a disability in showing love or kindness, those unable to do anything other than judge. The ugliness in this world is rife.

    Carys is beautiful and so so strong I adore hearing about her achievements of which this year there have been an exceptional amount 💖

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  16. I hear you, Ali! We’ve taken to using the word “challenged” hear. Too short – vertically challenged, not a dwarf. Confined to a wheel chair – mobility challenged – not crippled. Would mentally or intellectually challenged be too difficult to use?

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    1. The term I have heard most often used is developmental disability. But that still has the word disability in it. With respect to physical impairments like being a little person, it’s not that the person herself is height challenged, it’s that the environment isn’t set up for someone of her height so it is challenging for her. Our language just doesn’t make the distinction and the way we use the words makes it sound like the person herself has a problem, when it’s the environment and the culture that’s the problem.

      I agree, I can’t stand ‘”wheelchair bound” either, as if someone has been sentenced to an unbearable confinement when in fact what they are doing is using a mobility tool, just like we all do everyday. No one is “car-bound” on their way to work, for instance. 🙂 The term I’ve heard is has/uses a wheelchair, or person with a mobility impairment.

      I’ve heard standards are different in Europe than in America, as to whether the person always comes first–such as “person with a disability” or second “disabled person.” I find the latter much more offensive than the former but it seems to be the convention in the UK. It would be considered very rude over here, though. I’ve used the term challenged before as well, I do think it’s a more neutral term although it has the problem I mentioned of maintaining an ambiguity as to who and what is responsible for that challenge. I guess I’d say that as rule of thumb, just ask each person how they would like to be referred to if you need to describe their impairment to someone, just like you’d ask someone what gender pronoun they wish to be referred to as. Then you are guaranteed not to offend–most people will greatly appreciate that you asked. People have preferences and there’s no final verdict on what language to use yet, because our language isn’t there yet– again, interestingly, the same can be said of the recognition of a growing number of gender identities. Hopefully this all means we are coming into a more inclusive world. I sure hope so.

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  17. Eilis has it for me. She has written pretty much exactly what I wanted to say albeit with greater clarity. I went on a course this weekend past for the youth club where I work, around running play sessions. This focused on using play to teach children about the different abilities we all have and the distinctions being made were between impairments and disabilities. Impairment is an odd,clumsy word but adequately describes my poor sight and extreme right handedness as much as it might some of the cognitive challenges the autistic youngsters I work with have. The disability, as Eilis so well explains it is caused by the environment failing to cater for each individual’s specific needs – in my case glasses are very good but still do not completely correct things – and we learnt how to use games and play as ways to show how our behaviours and those of the environment can be adapted to assist others with those different abilities and impairments. Language is forever failing us because of the politicised way we use it and the underlying assumptions people make on hearing certain words and I hope my clumsy way does not offend; I only hope to understand as much as I can in order to help other youngsters prepare and adapt to maximise everyone’s talents.

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  18. She is a person, not a condition, or useful pigeonholing phrase. Since I moved to France I am “Handicapée” – little translation needed, because of a limp and being on a cane. Celebrate the abilities is the right idea. We are all different. I don’t play an instrument, I’m useless at sports, and like another commenter I string four swear words together (bilingually) like a French Foreign Légionnaire, (or typical bar propping Ulsterman – take your pick!), but i have one or two useful abilities (so I’m told). A beautiful child, with a beautiful spirit, that shows through the photos. The lack is in others, simple as that. Bon weekend from a Wild Goose in the wild north of France petal.

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  19. Beautiful, Ali! I lost count of how many times I was responding with “Yes!” in my head. 🙂 I extremely dislike “special needs” as well, for the same reasons you do, I even argued about it in my dissertation no less. 🙂 I think the term “people with disabilities” is a half acceptible label for now, given that our cultures are fixated on dividing people and creating in and out-groups and then chopping up acceptible forms of benefit and funding for each to pursue the same right to happiness we all are supposed to equally share. You need a way to say to a policy maker, “this group you keep trying to marginalize are human just like you and deserve equal rights and opportunity.” I wish we – all humans– realized there was no separation, that it’s detrimental to people with any feature that is culturally not deemed normal or good (or privileged, as in the case of different genders or races), as well as harmful to everyone who currently fits the cultural norms to make such judgments and divisions. I wonder how many wars we could avoid if people suddenly realized that supposed enemy they are about to kill is as closely like them as their siblings, parents, and children? It is much easier to kill, enslave, discriminate against, marginalize, judge, label, push away, or belittle someone if you see them as slightly less human than you. That is, in my opinion, exactly what terms that denote inferiority, othering, specialness, deficiency, abnormality, or less than ultimately do. For example, dis-abled, invalid (really, we’re not valid, how pointed can it get?) or handicapped (hand in cap descriptive of when people who developed or acquired an impairment had to beg on the street just to get by). I sincerely prefer that everyone learn the distinction between disability and impairment, which you’re talking about. It’s not insulting to describe Carys as having, among many many wonderful and incredible things about her, a syndrome, or a scraped kneee–those are discriptive terms for impairment. I can’t see, it’s useful to me and I am not offended when people recognize this about me. I’m not defined by it. I’m many, many, many other things, have many other features, properties, ways of being. Disability on the other hand wouldn’t exist if our societies got their act together. Impairment is to disability as a person’s skin color is to their race, as sex is to gender (with obvious disanalogous things to be said, but the main framework is the same. The first term in each category describes features of a person objectively. The second term in each set describes an entire set describe something entirely socially and culturally constructed. If we could construct it, we can dismantle it, and I hope eventually we live in a world that has transcended this kind of ignorance and prejudice which I often feel is just a huge embarrassment to our otherwise intelligent, capable species who needs love as much as any kind of material sustenance to survive. And where will we be if we don’t get this in the next one hundred years, will we still be here? If we’re still here, will we have learned to care for ne another or will we be continuing to live in the completely preventable suffering of separateness? Sorry for the novel!

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  20. Bravo, Ali!

    “Disabled” is bad enough in itself as a word… I wouldn’t suggest you look at dictionary definitions of the verb ‘to disable’… it makes my blood boil that such a word can be applied to any human being.

    Yes, we have to label and group and assign terms to our nice, neat little boxes. That way it is easier to judge those within them en masse and apply our fears and prejudices, unconscious or not, to what we don’t really understand or know enough to even dare make judgements about.

    In fact, I can’t think of any instance where ‘disabled’ is used and doesn’t imply lesser, vulnerable, damaged or worse…

    I don’t know by what term we can refer to the thousands of folk society lumps together under the term disabled. Perhaps we could just call them ‘people’… how’s that for an inflammatory idea?
    x

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    1. Fantastic, Sue! 🙂 I don’t think vulnerability is such a bad term though, if we apply it to humans generally. Each of us is as vulnerable as the next, both with respect to the uncertainty of life on the whole as well as to the likelihood of facing a myriad of circumstances. To my mind, human vulnerability is as pervasive as breathing. Then again, used in terms of being vulnerable, our ability to allow others into our lives and show them who we are is one of the greatest gifts we have as humans. I am of the mind that without the ability or willingness to be vulnerable with others, we would not be able to form human connection or show compassion. In my personal experience (because I’ve honestly been getting a lot of practice with it) allowing yourself to be vulnerable and letting yourself be open to every moment is one of the most courageous things a person can do. Again, it’s a matter of how the word might be able to be defined, as opposed to the falsehoods our cultures like to perpetuate by using the word incorrectly in a way that hurts certain groups at the expense of benefitting others. It makes me really sad to see this everywhere. Until things change, the word vulnerable will probably continue to be synonymous with weakness, rather than denote the tremendous strength needed to navigate circumstances where the word would apply with grace and compassion. Just my thoughts. 🙂

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      1. Vulnerability should be seen as a good thing… the ability to be open to the world and allow it to reach the heart… Sadly, like so many other terms, it has come to be seen as something completely different… a weakness to be denigrated. We are not very good at being seen as emotional creatures on the whole.

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