5 Minutes With Rachel Gross

I first started following Rachel Gross on Instagram a couple of years ago, though I can’t remembers exactly how I found her account. However, like me, she also has Nemaline Rod Muscular Myopathy, so it’s been great following her life, as we are the same but different in so many ways.

Rachel is 24 years old and lives in New York. She is open and honest on her social media, sharing the ups and downs of what it’s like to live with a physical disability. However, she also uses these platforms to share her love of fashion and makeup, creating some amazing looks!

Tell us a little bit about yourself

My name is Rachel Gross. I just recently turned 24 and was born, raised, and still live on Long Island, which is just outside of New York City. If I had to choose 3 words to describe me, they would be passionate, creative, and optimistic. Disability rights and advocacy, as well as beauty and fashion, have all been huge parts of my life for as long as I can remember and I use my platforms on social media to showcase that.

As I’ve mentioned before in my interview with Luke, Nemaline Myopathy affects us all in different ways. So how does it affect you?

Nemaline Myopathy has such a wide range of severity. Some people can walk and don’t need any assistance, and others are completely vent dependent and have little movement. What we all have in common, though, is that we are incredibly intelligent. I would consider myself to be on the moderate side. While I do have a trache, use a wheelchair, and rely on other people for almost every aspect of my life, I still have good use of my arms, I can speak, and pretty much do anything I want with a little help.

What’s people’s first reaction to your disability but also to your trache (which my readers might not be familiar with)?

Most times, the first thing people see is the chair. It’s frustrating because as a person, I want other people to perceive me for who I am. I don’t want to just be the ”poor girl in the wheelchair.” I want to be seen as the awesome girl who is full of life, who has a great sense of humor, and who will always try to brighten someone’s day. Unfortunately, it is rare that people will actually take the time to get to know me before making assumptions.

The trache, I’ve found, doesn’t really impact a person’s perception of me as much as my chair does. It’s not as noticeable, but it does affect the way I speak. My speech is hard to understand at times, and I find myself not speaking to people as much as I want because I’m afraid they won’t understand me, and vice versa.

How does this reaction translate into the online world, especially with the videos you post on TicTok and your YouTube channel?

I’ve gotten mostly positive feedback on social media. A lot of the things I post have to do with stereotypes disabled people face, and showing what life is like as a disabled person.

What have been some of the most hateful comments online and how did you usually react to them?

I recently posted a tiktok about the misconceptions of dating and disability. Some of the comments were really rude and either called me a vegetable, or that no one would ever want to be with me (a disabled person). Honestly, I just laugh at the comments because it’s clear that these people literally have nothing better to do with their lives than try to hurt my feelings, which didn’t work. Those comments are exactly why I make the kind of content I do.

I also read that you found it quite hard to find a job after you graduated. What has been your experience with finding a job?Why do you think employers are too quick to see a disability rather than what a person has to offer?

I have a degree in Public Relations, and during the year after I graduated, I went on countless interviews. I had a few good ones, but at each one, the whole vibe changed as soon as they found out I was in a wheelchair. I felt judged. So, after a few months I took a break to try and figure out what I really wanted to do and ended up getting a job I love doing grant writing for non-profits.

I think employers are quick to dismiss potential disabled employees because they just don’t know how to handle us. I also think that some employers are trying to obtain a certain image, and if they hire us, we will taint that image. It is completely unfair and I wish employers saw our credentials and not our disabilities, because that’s really what matters.

You’re also very active on Instagram (you can follow Rachael @riizzyray). What do you hope to achieve by allowing strangers into your life?

The whole reason why I do what I do on social media is so people can have a better understanding of what life is like for disabled people. I want to show the good, the bad, the not so pretty, the injustices we face on a daily basis.

Outside of advocating online, you also enjoying posting pictures of your makeup. What are some tips and tricks to applying makeup with a physical disability? Favourite product that makes your life easier?

Hmm…one trick that I do is that I use a fan brush to do my contour instead of a contour brush. I find it way easier to do that way because I don’t have to use as much strength.

Where do you hope to be in 5–10 years?

My ultimate goal is to be able to move out and live on my own. There’s a lot that goes into that, as a disabled person. So right now, that is the only thing I’m really working towards. Anything else that comes is a bonus.

If you could tell the world one thing about what it’s like to live with a rare physical disability, what would it be?

We can do anything we want with just a little creative thinking.