On Friday I had the incredible honor of doing a takeover of Elizabeth Holmes’ Instagram! I put up a Q&A box during part of it and got SO many good questions, and then put up another Q&A box on my own Instagram on Sunday because there just wasn’t enough time to answer them all. I’m going to answer a few of them here in more detail – some that I already partially answered, and some that I didn’t get to.
What do you prefer to be called? I learned “person with disability,” but is that outdated now?
For me personally, I’m fine being called woman with a disability OR disabled woman. Typically, I’ll refer to myself as a disabled woman, but I’m not offended by being called a woman with a disability.
For a little background – “person with a disability” is called person-first language, whereas “disabled” is called identity-first language. Back when it came into style, person-first language was intended to make people see the person, and not just the disability. But now, the thinking has evolved. Calling me disabled doesn’t take away from my humanity! It’s just one (important) part of my identity.
What I DON’T like, though – being called anything that’s infantilizing, or that tries to hide the word disabled like it’s a bad thing. Special needs, or differently abled, or person with special abilities… all of those are just euphemisms for disabled. If we keep trying to hide disability, rather than embrace it, the stigma that still surrounds disability will never go away.
What advice do you have for parents of disabled children?
I really love that parents are asking this question – just the fact that they’re asking means that they’re trying! My biggest advice is to build a community – find other parents of disabled kids, AND find other disabled people themselves, and parents with disabilities, especially. I think that my parents did a great job raising me and my sister, but they still don’t know the disabled experience the way that my sister and I do. So finding a community is really key, and is something that I wish I had more of growing up – both for my parents and for myself. It’s much easier now with social media – definitely take advantage of that.
Whenever possible, help your child do what they want to do, and what the rest of their friends and classmates are doing. Be inventive! Sometimes that might mean making your house the one that your child and their friends hang out with (that’s what I did a lot growing up). Figure out a way so that they can go to the movies and the mall with their friends (or whatever it is that kids do these days). Don’t make them feel like their life is limited by their disability.
And then the other big piece of advice is to give yourself grace. There will be times where you mess up and don’t fully understand the disability aspect of something, or times when you’re out in public and get frustrated by the way people treat you and your kids. You don’t have to be perfect – just willing to learn and change!
What’s it like having a sister with the same disability?
Honestly, it’s great, and I feel really lucky. Does it make things harder sometimes? Absolutely. It takes us a while to go anywhere if it’s all of us (me + my sister + my parents), and traveling is definitely more difficult. But growing up, it was just SO nice to have someone who was going through the same things that I was, and who just “got it,” no explanation needed. It was especially nice since I didn’t have the social media connections to other people with SMA that I do now.
Don’t get me wrong – we’re still sisters and still have stupid fights! We’re opposite in terms of personalities in SO many ways – we joke that if we both like something, it HAS to be good because of how rare it is. But I think we both still felt grateful to have each other growing up.
What kind of meals do you like to fix? Do you eat just for fun or do you balance your feeding tube and eating?
Because SMA makes my muscles weak, it can make chewing and swallowing difficult. So I tend to go for things that are relatively soft and easy to chew – risotto, salmon, mashed potatoes, orzo. And sauces make things a lot easier to eat, so I put BBQ, or honey mustard, or ranch on almost everything.
I love food and going out to eat! I use my feeding tube overnight and probably get half-ish from my calories for the day from that. I still eat three meals a day, but the feeding tube takes the stress away from mealtimes – I can eat what I want, when I want, and don’t have to worry if what I’m eating has enough calories.
What can non-disabled people do to be good allies?
The absolute best thing that you can do is support disabled people, and their causes, without question. For example – when we tell you that banning plastic straws is ableist, and that we do need them, don’t ask us if we’ve tried metal straws, or silicone ones, or paper ones, or why we really need them at all. Believe us, and stand (or sit) behind us, and help us advocate for change.
And in anything you do – whether it’s opening a business or planning an event – make sure you’re being inclusive and welcoming of people with disabilities! Hire disabled consultants, make sure disabled people are on your panels, and choose spaces with elevators, ramps, and accessible bathrooms.