I was the last one to sit down at the large round table. While I am a strong, confident woman, intimidation was welling up inside me as I looked around the room. There was an occupational therapist, a speech therapist, an adaptive physical education teacher, a special education teacher, a general education teacher, a school psychologist and the school principal. While everyone’s faces were friendly, I knew why we were gathered: to discuss the IEP, or Individual Educational Plan, of my 8-year-old daughter, who has Down syndrome.
I am not her biological mother. When she was born, she was diagnosed with Down syndrome shortly afterward, and her biological parents decided they did not want to be Mom and Dad to a little girl with special needs. So, she was placed in the care of an adoption agency and three months later, she became ours.
People often praise us for choosing to adopt a child with Down syndrome. The truth is, when I learned about this baby, I was no better than her birthmother. I grew up in the same world that she did, a world that tells us a child with a different skill-level is a terrible thing and something to be avoided at all costs. Yet by God’s grace my heart shifted and my perspective changed, allowing me to say “yes” to adopting my baby girl.
When our daughter, whom we named Macyn Hope, came home, we found ourselves catapulted into a world we knew little about and quickly did all we could to figure it out. We discovered this “Down syndrome” thing is pretty incredible. Macyn had to work harder than most babies to achieve each milestone, and she did it with grace and tenacity As it wove itself into the normalcy of our day-to-day lives, I would often catch myself looking around trying to figure out how I got so lucky. It was as though there was this secret club of people who get to do life with Down syndrome, and somehow, I was let in.
But the world of Down syndrome is not all lazy rivers. Over the past 8 years, I’ve spent more time in raging rapids, clinging onto a rock for dear life as my daughter has undergone lifesaving surgeries and spent way too many hours in doctor’s offices. And as we have entered the world of public schools, the taste in my mouth has been anything but sweet.
I work twice as hard for my daughter to be viewed as half as much.
It didn’t take long for me to discover that I must work twice as hard for my daughter with Down syndrome to be viewed as half as much. It’s simply a fact.
When Macyn steps out of our front door, she is stepping into a world where she’s seen as “less than” because she does not look, talk, learn or respond to things like most people.
This has been most evident as she’s started school, which brings me back to the IEP meeting. I asked for the meeting because I believe my daughter, like all daughters and sons, should get to participate in school with her peers. However, most schools still have separate classes and programs for people with different abilities, shoving them into the corners of their campuses and stamping it with, “This is what’s best for the student.” I realized I was going to have to fight for my daughter to be in a general education classroom. It would be me vs. eight educational professionals and a lifetime of broken systems.
I’m not saying people in education have lower expectations of people with different abilities. I have seen first-hand the love and fight of so many educators on the front lines, making sure students with different abilities are valued and esteemed. Often, it’s these very people who have fought for and created the same legislation that give my daughter, and others like her, the right to attend school at all.
Here’s what I am trying to say: The problem with the school systems is that the legislation in place – and even the legislation in the works – springs from the systemic idea that people with different abilities are less than. This idea has been pounded into the very fabric of humanity. Those of us in the West think we may have risen above or moved forward with programs and services such as IDEA (Individuals with Disabilities Education Act) or ADA (American with Disabilities Act), both of which are federal legislation put into place to protect the rights of people with different abilities and ensure they have full access to their communities with everything from handicap-accessible sidewalks to serving the educational needs of students with different abilities. And yes, while we have moved away from separate schools, we need to recognize that many still carry with them a perception that a person who is differently-abled is less valuable. And the stain of this reality cannot be easily scrubbed away.
Often, people who do not have a loved one with Down syndrome will comment about how far we have come as a society. It’s true that people with Down syndrome are no longer placed in an institution, as they were 60 years ago; however, today the news of a Down syndrome diagnosis is almost always met with devastation. Most women getting an In-Utero diagnosis choose to terminate the pregnancy or choose to create an adoption plan. The families in this category are not bad people; they are simply doing the best they can with the systems and ideas being silently shoved down their throats.
If people knew my Macyn – I mean really knew her, or anyone with Down syndrome – they too would understand how truly amazing Down syndrome is and I imagine would be quick to include her in any general education classroom. They would know she genuinely desires to be friends with everyone she meets. She’ll walk up to any stranger and ask, “What’s your name?” Her love for life and the people who live it is immeasurable. Her desire to dance is uninhibited and disarming and I dare you to simply sit and watch. She has a way of getting others to their feet as she challenges them to a “booty shake.” She is brave and kind and smart and this world is a better place because she is in it. Every day, as I hold my daughter’s hand and step into a world where I must fight for her to be viewed as worthy, I pray for eyes to be opened and minds to change. We need ears to listen to those with different abilities, to hear their voices and learn from them. We need voices to speak up and shout the worth of people with different abilities. And we need hands and feet to step into this world and do the work needed for all people of all kinds of abilities to be seen as the worthy creations they are.