An Important Change
When my baby was born a micropreemie, every doctor, nurse, and social worker danced carefully around one word as if they were afraid to say it to me, “disabled”. When I was pregnant, they didn't know for sure my babies would be disabled, but they said that if my identical triplets survived, the chances of disability were very high. We constantly had statistics thrown at us that boggled our heads, but didn't change our hearts. When two babies were lost from twin to twin transfusion, I was told that identicals that survive TTTS typically have some brain and heart irregularities and when my surviving baby's water broke before viability, I was told she would also likely have lung problems if she survived. Well, my strong Hannah was a fighter and she survived, but not without a few disabilities from the TTTS, being a surviving triplet, not having amniotic fluid for 5 weeks before she was born, and being born a micropreemie. She was 3 days old when someone first told me outright about her disabilities, and it didn't surprise me or change my love, but what did surprise me was the dance and gentleness they used while talking to parents about their child's condition and especially around the word “disability”.
I quickly realized from filling out applications that most of the official government organizations that offer support to the disabled or families with children that are disabled, only use the word disabled or variations thereof. I found this a little surprising, since many of my past interactions in my life with people with disabilities, I had used the words “special needs”.
What I learned in my research and talking to others with disabilities and people who work with disabled people was really eye opening. The biggest thing that stood out for me is that “special needs” is a word that was made up by people outside the disabled population, like parents. I also found out that most adults with disabilities prefer the word disabled. Especially in reference to children with disabilities, using the word disabled centers on serving the child and their disability versus serving the parent. There are many arguments in favor of using the word disabilities instead of special needs. This one was particularly helpful.
I found this document really helpful for what words were once used and which words are now more accurate to use to describe different disabilities. I'm new to this world as a parent with a child with disabilities, so I'm absorbing all the information I can as I navigate her many needs.
For about the last year, as a babywearing educator, I've had the honor of collaborating with an awesome team of volunteers at Lift Me Up and helping with their mission. The mission statement for Lift Me Up currently reads, “Lift Me Up, Inc. is a 501(c)3 non profit organization providing babywearing carriers, education and support to families who have children with special needs.”
As a collective team of volunteers, we've decided to change our use of the word special needs to disabilities to be more inclusive and up to date.
Contributed by Jenni, LMU volunteer
Posted on Wed, November 15, 2017
by Lift Me Up