You may not have heard about the Person First Language movement. I don’t know if it’s really a “movement”, but it seems like one to me. I do have a lot of feelings about Person First Language though.
Since being a part the Special Needs Community, I have noticed that Person First Language has been a big discussion. It never really phased me with my first daughter. Now, with a second daughter who has special needs, it’s really getting my attention.
With my first daughter, her genetic condition was so unusual. We were not part of any support group for her specific condition, none existed that we knew of. I called myself, a Special Needs Mama, a Mom of a Medically Complex Child, I called my daughter, a Special Needs Child.
That is not Person First Language.
Person First Language takes the disability/diagnosis language and puts it in AFTER the person. For example, instead of a Special Needs Child, one would say, a child with special needs; instead of an Autistic Child, one would say, a child with Autism; instead of a Down’s Child, one would say, a child with Down Syndrome.
From my understanding of this, “movement”, the Person First Language helps to downplay the personal negativity of a diagnosis. A person is not the diagnosis first.
And, let me tell you, this is a hot topic among the people in the Special Needs Community. Some parents feel outraged when their child is called, “Down’s” or “Autistic”.
For me, I’m not part of the movement. I will call myself a Special Needs Mama, I will say I had a medically complex child. I will not call my child a Down’s child, just because it does sting my heart. Why does it sting my heart? It sounds so negative to me. Because, I have been conditioned to have negative feelings when Down syndrome diagnosis is expressed in that way. The word, DOWN, is inherently negative, it means, “lower, in a weaker or worse position”. You could call her a Trisomy 21 baby and I’d be okay with that, I don’t feel that negative energy. That means that she has 3, 21st chromosomes.
And that’s just it, it is, again, about the meaning. It’s not about where we put descriptors in our language, before or after the person. It’s about the definition, the context, the comprehension.
I am many things, a woman, a wife, a mom, and I am deeper than that…I am a Special Needs Mom, I am a Heart Mom. My daughter had medical complexity; she was a medically complex child. However you spin it, it means the same thing to me. By saying my daughter was medically complex, it did not diminish the many other parts of her person.
Person First Language is not necessary when it isn’t related to a diagnosis. Thank God, because it would be exhausting! There are organizations that support and celebrate, Black Women Entrepreneurs and those organizations don’t say, “Entrepreneurs who are women who are black”. Know why no one says it that way? Because they are proud to be BLACK WOMEN Entrepreneurs. The YMCA and YWCA? Young Women & Young Men’s Chrisitan Association. No one would say, “The Association for women who are young and Christian.
Person First Language is just related to using a disability/diagnosis when discussing people.
We don’t like it when someone says, “Down’s baby” or “Autistic child”, because those words exude negativity and tower over everything else. It makes us feel like our child is only being seen as a diagnosis. But, that has nothing to do with the way the words are arranged in a sentence and everything to do with the way people perceive diagnoses and disabilities as negative and all encompassing.
That’s the real problem.
What they are trying to accomplish by implementing Person First Language, is representing a person before and above his/her diagnosis. And I don’t totally disagree with it, I just think it’s going to take a lot more than that. Just because people follow Person First Language and say, “she is a child with Down syndrome/Trisomy 21”, does not mean they see our child as more than his/her diagnosis.
It’s the meaning of the words, the understanding of the words, the intention with which those words are said–that is what truly makes an impact. That is how people will be viewed before and above their diagnosis, not just by the structure of a sentence.
As a Special Needs Mom, I will share with friends and family how I speak about my daughter. I will share with them how I would like them to speak about my daughter.
I will teach my daughter that she is worth more than a simple sentence can describe. I will help her to understand that having Trisomy 21 is a huge part of who she is, it literally is part of every cell that makes up her being, and she should be proud of that, I am.
I will also help her to understand and appreciate all the other parts of who she is, because, though Trisomy 21 will be a huge part of who she is, she will also be so much more than that. Educating her about her self worth is my priority, I can only hope that the world learns along with her.