Differently Abled: The Power of Words
By Gigi R. Khonyongwa-Fernandez, Parenting Coach
I personally hate the word “disability,” which is why I purposely put it in quotation marks whenever I write it. My distaste for this word developed long before my precious son Alejandro entered this world unexpectedly in my 24th week of pregnancy; before he developed severe retinopathy of prematurity (ROP) in the NICU which left him legally blind in both eyes; and well, before he was labeled with significant global developmental delays, complex medical and surgical history, and vision loss.
“Disability” and I parted ways back in the early 90’s, when I was practicing as a neurological occupational therapist (OT). I could never quite get my head around how a person could all of a sudden disappear (in the eyes of the therapeutic community) the minute he/she suffered a catastrophic injury or illness. Why did we immediately start referring to them as “stroke” or “head injury” patients instead of by their names and why was everything about what they did (or didn’t do) viewed under the umbrella of their condition? We were losing the essence of their true being because of our need to define and treat a condition. We were forgetting that we were treating, first and foremost, a human being – no different than ourselves.
The term “disability” is complex – filled with perceptions and assumptions (often misperceptions and incorrect assumptions). I would like to challenge the word and how we experience its meaning by exploring 3 empowering ways to turn it on it head and start creating a better state of being for ourselves and for our children.
Own Your Experience
What’s in a word? Nowadays the phrase that is increasingly being used to describe “disability,” at least in discussing children, is “special need(s).” Your “special needs child” – sometimes it’s stated alone and other times it is coupled with the word “disability.” But even when you consider the use of “special need(s),” something other than your child is still taking precedence over their individuality. Do the words we use really matter?
Remember that childhood rhyme, “Sticks and stones may break my bones but words will never hurt me?” Well, that’s a bunch of malarkey because words are powerful and can either lift you up or bring you down. Can being called “disabled” hurt my son, for example? Of course it can if it is used as his primary identifier. I challenge all parents to empower the child versus the word. Let your child, as a person, become the definition of their condition, rather than the condition becoming the definition of your child. In my case, how Alejandro lives now – how he shows himself to the world – is how he is defining blindness and developmental delays. They are not defining him. Likewise, your child can start defining Autism, or deafness, or a learning disorder – whatever special need he/she may be facing. Of course, this defining must be taught to them in a way they can understand. Alejandro is 4 ½ years old and I speak to him about his blindness in his language: “You have special eyes and wear glasses to help you see.” As parents, we can help our children create their own definition by encouraging them to “own” their experience instead of it owning them.
Shift Your Beliefs, Empower Your Child
Beliefs are incredibly powerful. They are often things we don’t question. They are rules that we judge our experiences by and act on as convictions. Your beliefs about something can have an impact on your unconscious mind (i.e. if you tell yourself something long enough, you believe it is true, even if the evidence proves otherwise). What conscious or unconscious beliefs do you have about someone with a “disability” and how are these beliefs affecting your child?
It’s so important for us to remember that our child is our child first – above all else. He/she is not our “blind child,” “deaf child,” “spina bifida child” or “Autistic child” and shouldn’t be described as such. If we always state (or even think about) their “disability” first then what are we saying to the world about our child? What are we saying to our child about themselves?
I am not talking about your beliefs about the actual diagnosis of your child, which may be hard facts, but rather about how your beliefs about their diagnosis impact them and how you think about them.
If you see your child as having a special need first, that is how you are going to treat them. If you see them as your child first, then that is how you will treat them.
If you do feel the need to describe your child to others, use their name first and then add what their condition may be. Our children pick up most of their cues from us. How we relate to them and their condition will significantly impact how they relate to it themselves.
Embracing Different Abilities
The phrase(s) – “differently abled” or “different abilities” – are causes for celebration as far as I’m concerned. They are a positive, refreshing and bold way of looking at your child and I find myself eagerly embracing them for 2 main reasons:
-They come from a place of wholeness versus a place of deficit, which is where the word “disability” comes from.
-They never mention the challenges your child may be facing – they don’t have to because the focus is on their strengths and what they are capable of doing.
Interestingly for some parents, “disability” is a word that is easier to understand and make sense of because it is commonly used, it’s familiar in a way that allows us to handle it intellectually and emotionally. The concept of being differently-abled is, unfortunately, harder for us to process because it forces us to switch our perceptions.
All words aside, at the heart of the matter is that we all have different abilities and strengths and these aspects of who we are must be given the time and space needed to grow and develop. Your child is no different and all of his/her abilities are unique and special to him/her as an individual and should be highlighted and celebrated.
Gigi R. Khonyongwa-Fernandez is the mother of an ex-24 week preemie and Founder of Families Blossoming LLC: parent coaching for parents of children born prematurely, who are medically vulnerable and sick and/or parents of children with special needs. Feel free to drop her an email at: firstname.lastname@example.org if you need further support or just want to say hello!