EXTRA Chairs

By Mika Hartman

Last month, I mentioned that we all deserve to have a “seat at the table”; Hudson shouldn’t need his own table because he was born with an extra chromosome. I think I can make this make a whole lot more sense:

When Goldie Locks was testing chairs, beds and porridge, she found 2 of the chairs and 2 of the beds to be “too hard or too soft” and, then, she found the porridge to be “too hot and too cold”. Eventually, she was able to find the “just right” fit for her in all three. How this correlates is that we all have different needs, but the three bears still shared the same table. The bowls of porridge we not on separate tables even though they were all different.

Inclusion is making sure that we all have seat at the same table. No matter the person, we are likely to all have a different experience when sitting together. When we are able to provide equal access to opportunities, we open doors so that the individual can decide what they are capable of. We have all been pushed to try harder or study more, because the opportunity is already there. We become the best versions of ourselves when we experience full lives. When you keep someone from joining your table, you’re denying them the equal chance to live their full life.

I often say that healthcare is not a “one size fits all’ healthcare. Even in anesthesia, your hair color makes a difference on how the medication works. What might work for you might not for your friend. Even though my best friend and I were diagnosed with breast cancer at the same age of 46, our cancers were totally different, treatment and so on. Despite these differences, we all have a seat at the same table. To fully understand why I am bringing healthcare in this conversation, let me share the ugly truth our families face.

Many countries, including the United States, encourage moms and dads to abort babies who they have performed pre-natal diagnostic testing and Down syndrome has been determined. Some countries wish to eradicate Down syndrome fully and don’t provide parents with “options” at all. Actress Patricia Heaton posted on Twitter “Iceland isn’t actually elimination Down syndrome. They’re just killing everybody that has it. Big difference.” Isn’t that sickening. CBS News found there are common trends across Europe, when it comes to women terminating pregnancies because of positive prenatal tests. Denmark: 98%, United Kingdom: 90%, France: 77%, and United States: 67%. I hear the number for the US is getting better, but until its zero, we still have a message to spread and hearts to change.

As you can see, a seat at the table means to accept each person and embrace their differences. When you are trying to eradicate a group of people, you are not only saying that they don’t have a seat at your table, they don’t deserve a seat or a table. This mentality has to stop. This is from a mom on this beautiful journey, I love my life. My son loves his life. My family adores my child. If I am walking this path and I am doing the work and all you have to do is provide a seat at the table, why is this so hard for society?

We are a military family and we have been blessed to travel with my husbands job. We have traveled Europe; we lived in England for three years. All our trips were before Hudson came along. We have talked about assignments and potential moves we could make; this took me down a rabbit hole. Hudson does need specialty doctors for his heart defect and HemOnc for his transient leukemia and so on. Going to a place that can provide all Hudson needs can be challenging. When we lived in England, we traveled to Germany often. It was our favorite. We always said we would love to be stationed there, until I discovered how this country sees Down syndrome. They not only abort 90% of babies diagnosed with Down syndrome, they have in their abortion laws that you can’t terminate past 12 weeks UNLESS Down syndrome is diagnosed, then it is permitted later. Technically, abortion is illegal altogether in Germany, except under certain “circumstances”. Germany, in 2022, made the non-invasive prenatal test one that will be publicly reimbursed to encourage early diagnosis. I imagine that this will only increase the abortion rate. A campaigner against the Down syndrome test said, “I am worried that there will be fewer of us”.

This campaigner is correct. This early information will make it more likely that families will fear this journey. Why? Because they will believe that their child won’t have a seat at the table, that they will be pushed aside and a burden on the family and society. This is all false, but unless you recognize the problem, you might be part of it.

I try to steer clear of negative people. It can be awkward looks in a store or someone hiding their child behind them in the elevator… but the internet, it is beyond ugly. It makes ugly look beautiful. Seriously, avoid if you can. When did people get so nasty? So recently I read some comments about inclusion in the classroom. Some were totally against it, saying their child shouldn’t “be forced” to stay at a slower pace or “be forced” to include people who are different and make them uncomfortable. Wow. Really? I myself have three children who are all very different and they have the same parents. They each learn differently. Each at a different pace. A seat at the table says they deserve to be here and we will try our best to teach them in a way that they learn. Only one of my children has a disability, but each has unique characteristics and different needs to succeed.

I am a realist and I do believe that it’s not a “one size fits all” education system, like healthcare. There will be classrooms that better fit children and their needs. There will be teachers that teach in a way your child will learn best. Maybe a child will only thrive in a lunch or playground setting with everyone else… All of these still say you belong. It's when we forget that our children with disabilities are even present in a school or forgotten on the playground that we are sending a message to them and to everyone around that they don’t belong, but they do.

Have you seen the cartoon where mom is standing behind her child and her tongue is coming out her mouth and through the back of the child’s head and ultimately through the child’s mouth? This is so true. When we say, “my child shouldn’t “be forced” to like a child” or “my child will fall behind because of your child”, we are teaching our children how to value a persons worth. We are teaching them to think that they are better than other children. When, sorry, but they aren’t. We all have strengths and we all have weaknesses. We all learn by different methods. And we all want to be included.

So between the countries who wish to eradicate children like my son and arguments from people on if my son belongs or not, we are creating fear in families like mine. While I will never ask for a seat at Patricia Heaton’s table (like ever), I do think we could all benefit from bringing EXTRA chairs to our tables to benefit all. Everyone is welcome at mine and Huddy's.