Eight

I went to the New England Aquarium yesterday afternoon with my two nieces, Miranda and Amelia. Miranda is 13. Amelia will be 9 next month. On our way to the Aquarium, Amelia asked who the people coming to Boston to protest were. I told her that some of the people who announced they were coming were verifiably white supremacists. I gave her examples of what certain groups believed about other people in society. I told her that many more people believe that you should treat everyone the same regardless of race, religion, gender or sexual orientation.

I stopped short at the end of that sentence in a way that surprised me. My body literally would not push out the next few words. What I was about to say was that you should treat everyone the same whether or not they have disabilities and differences. But Amelia already knows that. She was sitting next to her sister, and her sister has physical and intellectual disabilities.

In the US, disabled persons are considered a protected class. This basically means that it’s harder to discriminate against someone based upon their disabilities. In reality, it’s very hard to enforce. It can be very difficult to prove that you were discriminated against directly because of your disabilities.

Disabled Americans have won important battles in the last few decades. We saw the passage of the Americans with Disabilities Act. We have access to Family Medical Leave Act if your employer meets certain requirements. We have legal rights to some accommodations at school or work. Our situation has improved without a doubt.

But disabled people are still trying to navigate a society that views them largely as a nuisance at best and a freeloader at worst. There is still open scorn for people who aren’t able bodied. It is politically incorrect maybe, but only just. You are constantly accused of wasting society’s resources. You are irritating. Annoying. If you don’t tell people about your illness, you’re hiding things. If you tell people about your illness, you’re always talking about your disease. If you post about your disease, you are looking for attention. If you don’t post about it, people message you privately for savory details. You can’t win. You seek validation and acceptance with every interaction and you seldom find it.

I couldn’t get the words out yesterday because Amelia is going to know soon anyway. The days when she is not regularly confronted by the marginalization of disabled people are rapidly coming to an end. But she has still has some days and I couldn’t take them from her.

If you live in the world, you may have heard that there was a political rally slated to happen in Boston today. Some high profile racist groups had announced their intentions to attend. But so did tens of thousands of Bostonians. I wanted to go so badly. But I can’t. I can’t walk into a charged situation where I could be robbed of my immediate access to lifesaving medication or emergency care. I can’t risk getting maced or hit with tear gas.

Because I can’t, people often feel that I don’t care enough about standing up for my beliefs and values. And they often feel like it’s okay to say that, too. Because there aren’t really any consequences except my hurt feelings. Society just expects you to fit into this role and if you can’t fulfill those expectations, you are difficult or whiny or weak.

Today was a beautiful day in Boston. I spent it with my mom, my sisters, my niece and Kristin’s mother in law to be, Ellen. Strong, intelligent, hardworking women all of them. I thought about a day in the future when Miranda might help Amelia into a wedding dress and when Amelia would be a champion for her sister.

Those days are coming. But today, she gets to be eight.