'Disabled' Hurts

(Names have been omitted to protect the privacy of this family)   

Recently a mother wrote to me after her daughter came home crying because someone close to her, referred to her as "disabled". Distraught as to how to console her daughter but also confused as to why this word would hurt so much, the mother asked for my insight and this is what I wrote to her:

'Thank you for sharing this with me. I am so sorry that this happened to both you and [your daughter] . Sadly it won’t be the last time but hopefully together we can set the stones to pave the path so one day it doesn’t.

My heart breaks for [your daughter] because I do know exactly how she feels.  The reason it hurts is because the word “disabled” has such a negative connotation in its literal meaning and in terms of what society thinks about people and children living with a disability; we are often, in as many subtle as blatant ways, treated and thought of as inferior, useless, weak, incapable, charity case, unable, strange, deformed, embarrassing, not normal, shameful, etc. There mistruths are so difficult to break down and even though [your daughter] and I both know that this is not true about ourselves, it still hurts when people put us down - intentionally or unintentionally -, especially when it is someone close to us.

The other reason it hurts [her] feelings is because in her world, in her mind, in her heart she is just [herself]; so when someone calls her “disabled” is makes her feel that just being her, just being [herself], is not good enough and she even if just for a second she questions herself. Tell her that I too have moments when people make me sad or for a moment make me self-conscious about my physical limitations or the way I walk…but it just pricks for a moment, I don’t let it sting too long because I know that those people are hurting inside themselves for whatever reason so they cannot see that there is nothing disabled about me; deep down what they are thinking and feeling really has nothing to do with me.

I would like to share something to consider telling [your daughter]: the disability is not [her] cerebral palsy or the physical or cognitive impairments that she might have. The “disability” is the intersection between those impairments and the barriers that society and people put in front of her, that prevent her from or make it more challenging to engage fully in every aspect of her life not only physically but with a happy and confident disposition. The disability is the environmental barriers and the stigma and discrimination of others that make her feel bad, excluded, hurt and sad; it is not her cerebral palsy. Looking at disability this way, where it is not the person but rather our environments that are disabled is called the Human Rights approach. This is how UNICEF works in this field. We always put the child/ person first. So [your daughter] is not a disabled child. She is a child who lives with a disability. Does this make sense? And the fact that she does it with such prowess and sunshine makes her the champion that she is.

Tell [your daughter] that any person, her, me, you, really anyone that has the courage, confidence and maturity to ask others for help when they are in a moments need, makes them very powerful, someone who is going to bring a lot of good energy and love to their own life and to the lives of those around them.

Let me share with you that my beloved father, who blames himself for my condition, has taken years to learn how to talk about what is happening to me. Once, as we walked through a crowd, he said “Excuse us we have a problem here, please make some room”. I immediately sat him down and explained, “Daddy, I am not a problem, neither is my wobble. The day that I can no longer make you laugh is  when we have a problem”.  He felt ashamed because he did not realize himself what he was implying nor how it might make me feel. My father is my guiding grace, my everything; I revere and adore him. And because I love him so much and I know he loves me, I don’t get mad at him when he does not know the right words to use. I share with him what I too am learning day by day about this incredible journey.

So my last piece of advice, that I am so humbled that you would reach out to me to share, is to encourage [your daughter] to educate [the person who called her disabled], maybe in a letter or over the phone. Teach her the right words to use to describe cerebral palsy and what ‘disability’ really is. Let [your daughter] choose the words, words that make her feel proud to be as unique and sensational just as she is.