A Borderline Disability

I have considered writing several different books about our journey with Down syndrome. Probably will at some point. From time to time, people sharing this journey post about some of the offensive, ridiculous, silly, maddening, well-intended, sometimes mean, often hurtful, discriminatory, or just plain ignorant things that have been said to them. Then, we all chime in sharing some of our own wounds and personal favorites. I also find laughter to be good medicine.

I have several personal favorites. One of my pet peeves is when I read “those afflicted with Down syndrome.” For someone reason, journalists seem to be frequent offenders. Of course, my response is no one who knows Rachel believes she is afflicted or suffering. Another personal favorite is when people say, “She only has a little bit of Down syndrome, right?” Pretty sure she got a full dose.

When Rachel was in middle school, I was volunteering at the school when a teacher I didn’t know sought me out and told me she wanted to introduce herself to me. She was a special ed teacher, and she was excited because she might have Rachel as one of her students next year. She went on to tell me that the other kids she had worked with who had Down syndrome were “Low, if you know what I mean.” This came complete with a wink, lowered voice and hand motions. I was so horrified that I went straight to the principal and said, “Not sure why this person thinks she’s going to have Rachel, but that is never going to happen.” And, it did not.

Another horrifying moment came when Rachel was in kindergarten. I had gone off on one of my rants about the segregated classroom they kept trying to offer us being called a “functional skills classroom.” The principal looked at me and said, “Well, Mrs. Mast you should be glad. It used to be called the room for the severe and profoundly retarded. ” I did not find myself glad. I still shake my head on that one.

We have now spent 20 years in the world of Down syndrome. Because I speak to lots of groups, have been a leader in multiple arenas and in general just have a big mouth, I’ve encountered lots of faces of human nature. I’ve seen people’s best days and their worst days. Some of the pieces of human nature I have seen are just not very appealing.

Just over six months ago, one of the most unappealing forms of human nature came to me in the form of another parent of an adult child with a “borderline” disability. Her term, not mine.  To my knowledge, this person’s child’s disability is undiagnosed and is invisible, but it does indeed exist. While discussing the very real struggles many people with disabilities have with feeling included at church, she reached across the dinner table, waved her finger in my face and said, “Let me tell you something that you probably don’t understand. Because she has a visible disability, Rachel is treated better than our girls who have borderline disabilities.”

I didn’t bite her finger off, throw a glass of water at her or slap her. I was so angry that I simply said that was not a very encouraging thing to say and excused myself to go for a walk and get some air. I removed myself from the situation so as not to say something I might regret. The words continue to ring in my innermost thoughts though. I’ve since witnessed more “less than desirable” behaviors from this same person. Behaviors based on ill-founded prejudices that have created chaos for someone I love.

So today, over six months later, I’m still pondering what to say? I have decided that something really horrible must have happened for her to have that much anger and jealousy directed at people with “visible” disabilities. I also thought to myself, so for the better part of 20 years I have advocated on behalf of individuals with all kinds of disabilities: physical, intellectual, invisible, visible- without discrimination.  I’ve advocated for laws and policies that benefit her child.  This is not the first time, I’ve encountered this discussion. Most likely, it will not be my last such discussion on the topic. However, the circumstances are different this time. The statement has so many things wrong with it, not to mention the fact that it is discriminatory.

As I said, this is not a new discussion. It is, however, the first time I felt it was a direct hit on my daughter. The other occasions were more a cry for help and understanding by people who felt desperate. One specific conversation was with a very good friend. It was years ago when our children were young. Her son did not have a diagnosis and did not have a visible disability. He had quite a few health issues, and she often felt like they were in a fish bowl being observed. She told me that I was lucky because Rachel had a Down syndrome and “everyone can tell by looking at her. She is cute and fun and people know strategies for educating her.” I acknowledged her frustration and sadness. I validated for her that sometimes there are advantages, but then there were also disadvantages. For example, I called a preschool that had been recommended for Rachel. It was at a nearby church. I called for information and mentioned Rachel had Down syndrome. Silence for a few seconds. Then, I heard, “Well, uh, sometimes THOSE KIDS have aggression issues.” My response was “Well, she is 2 1/2 and has Down syndrome?” I thought maybe she didn’t understand me. The lady went on to tell me quite a few things THOSE KIDS did. I finally interrupted and said, “You can stop because Rachel will not be coming to your school. She is not one of THOSE KIDS, and we do not want her to be at a school that feels that way.” The lady quickly responded, “Oh, I think you must have misunderstood me.” I responded that no, I thought I understood perfectly. I told that story to my friend, and she understood.

Many years ago, one of my mama bear friends told me, “We go to IEP meetings and no one says one good thing about my child. They tell us everything that is wrong. You go and people love Rachel and want Rachel.” Her son has Autism and we had been through a lot together. I made a mental note and added this to my workshops for teachers and administrators:

Always start meetings saying something good about a child. Always end the meeting saying something good about the child.  Find something good to say because we can always find something good.  That will set the tone for the meeting and moving forward.

It doesn’t happen much anymore, but there was a time when ordering dinner or at a doctor’s office or trying on clothes, the service provider would look past Rachel to me or her dad for her order or opinion or information. Since Rachel was quite small, we have had her order for herself and interact with doctors and other service providers. Note to parents: start young having your child order for her/himself, communicating with providers, educators and others. Even if they are difficult to understand or nonverbal, these are skills they need to be able to communicate danger, emergencies, and desires.

Another friend went to her son’s private school to meet with the principal concerning her daughter who had Down syndrome attending the school. The principal refused her application. He refused to even meet her. He told the mom that while he was “sure her daughter was cute, we cannot accept her at this school.” He wouldn’t even give her a chance. Had she had an invisible disability, the story might or might not have been different.

Then, there are the many calls I get from people who tell me they believe their child has a learning disability of some type. When they try to speak to the teacher or the school, they tell them that their child is doing just fine. Usually, several years of struggling later, these students have been diagnosed with some type of learning disability. The only answer I have to that situation is to be a persistent parent and trust your gut.

What I do know is that old adage about walking a mile in someone else’s shoes is applicable here. Hateful, discriminatory comments are never acceptable, but within our programs and in the larger disability community, it is even worse. We have enough prejudice to fight.

So to That Mom who clearly believes that Rachel is “more disabled” than her child who has a borderline or marginal disability, who believes that Rachel is treated better because she is cute (she mentioned that she was cute several times), I hope, That Mom, that you read this and see yourself and recognize that you have done to Rachel exactly what you don’t want done to your own child. I seriously doubt you will read this and even if you do, you won’t recognize yourself. I wrote this to make myself feel better because none of us has time for this kind of thinking, action, and discrimination. We’re too busy living life, changing perceptions, and in general just doing the best we can.

NOTE: Many individuals have unseen and undiagnosed disabilities. Just as we should not discriminate or put a person with a visible disability into one box, we should strive to understand and accommodate those who may have unseen disabilities.