Katharine Hubert

[Image Description]: Katharine smiles at the camera as she stands in front of rolling green hills with trees and cloudy skies. Katharine is wearing large glasses and a black and white striped shirt.

Meet Katharine Hubert (or Kat, also loves cats!), a fifth year genetics PhD candidate at the University of Wisconsin-Madison with Ehlers-Danlos syndrome and a passion for making science accessible.

You can find a catalogue of Kat’s #labdaptations in this shareable google slides link

Tell us about your STEM!

I study Hox (homeobox) genes, which are transcription factors that have long-appreciated roles in development. In mammals, there are a whopping 39 of these genes that work together to establish the body plan. Early developmental studies showed that mutations in Hox genes disrupt the skeleton and, for a while, scientists thought that these genes only functioned during development. However, we find that Hox gene expression is maintained in adulthood; Hox genes are expressed in skeletal stem cells. Furthermore, deletion of Hox genes in adult mice results in a disorganized bone matrix, establishing a function for these genes in skeletal homeostasis.

For my thesis, I’m attempting to understand their role in adult injury and repair, using an adult fracture model. I use both in vivo microscopy/histology techniques to assess the ability of Hox mutant mice to repair the injury and am conducting bioinformatics analyses to assess differences between the transcriptomes of wild type and Hox mutant stem cells, as they attempt to repair the injury site. It is my hope that we can leverage these analyses to better understand what Hox transcription factors target to enact repair. 

Truthfully, I’m not a huge fan of Hox genes themselves, but I was intrigued by this project because of the defect in the extracellular (bone) matrix. My own collagen mutation fueled my desire to become a scientist who studies the ECM. Collagen is the glue that holds your body together, so mutations in collagen are often multi-systemic and affect many bodily systems. As a patient, this is a lot to manage and can be overwhelming, especially with no treatments or cures. It is my goal to contribute to our understanding of the matrix, both in homeostasis and diseased states, to help build on our current knowledge and, eventually, inform treatments for these conditions.

What accommodations allow you to thrive in STEM?

When I was in the classroom setting, I had flexibility for excused absences for pain flares, which make it hard to think and be upright. Having this flexibility allowed me to take time for my health without fear of being punished for absences

In the lab, a lot of my accommodations are related to mobility, specifically with my hands, which are extremely hypermobile and fatigue incredibly easily. A lot of my accommodations are designed to reduce the pressure on my joints and reduce the amount of time I need to spend using my hands. I use ring splints, which lots of people with EDS will know about, they help stabilize finger joints.

More generally, I seek out cheap items online that can help me maintain independence in the lab. I call them #labdaptations. For example, I found an attachable arm rest that is meant for desks, but that I instead use at the lab bench to provide more support and stability to my arm while doing things like pipetting. That small addition has been a tremendous help. Having a plastic eppendorf tube opener has also been a lifesaver and saves my thumbs from repetitive motion. Grip tape (Dycem) creates friction making it easier to open bottles and hold items.

Tell us about #labdaptations!

When I started my science Twitter, I made the difficult decision to use a bold handle, @cripple_vs_stem. This decision was difficult because I essentially outed myself (my disability is invisible) and there is no going back from that. However, I knew that I wanted to generate discussion surrounding disability in science and this was a handle people would remember and think about.

My twitter account didn’t start gaining traction until July 2022, when I began sharing my #labdaptations (lab adaptions) as part of Disability Pride Month. I’d been using these tools for awhile and spent a good deal of time thinking of them, so I thought, why not share them when there is the potential for so many people to benefit? Perhaps sharing my #labdaptations also open peoples’ minds to the idea that accommodations and tools don’t just benefit people with disabilities and illnesses, oftentimes they can benefit everyone.

The first #labdaptation was a tool that I use to section bone tissue. Sectioning tissues is like putting meat through a deli slicer; bone tissue is particularly hard to section because bone is so, well, hard. So in order to section the bone, I stick individual pieces of tape against the tissue with my thumb before taking a section, and that’s a lot of thumb pressing. Sometimes it doesn’t stick because my fingers are weak. So, I thought of repurposing a beauty roller; instead of applying pressure through my thumb, I use my arm to apply pressure through the roller and adhere the tape this way. At the time, I had maybe 50 followers, so it got a few shares/likes.

And then out of nowhere, my Eppendorf tube opener #labdaptation went viral. Both disabled and non-disabled scientists were fascinated by this tiny plastic tool; the post got something like 400 retweets and 2,000 likes. From this, it was clear that content and ideas pertaining to lab accessibility were lacking and that many people, disabled and able-bodied, could benefit from them being shared. Ultimately, the reaction to this post encouraged me to keep sharing things I use in the lab to help me.

Since then, the response has been overwhelmingly positive, as are the opportunities that have come out of me sharing my #labdaptations. When I submitted my Hox gene review paper to Development, the journal asked for my Twitter handle to tag me in their post. Ultimately, they ended up scrolling through my content and asked me if I wanted to contribute to a voices piece on disability in the lab (you can find it at this link). I also had the opportunity to speak on a GSA (Genetics Society of America) panel, on “Creating and Maintaining Accessible Research Environments”, which was such a great experience (linked here)!

Truthfully, it doesn’t feel real - I’m just a grad student trying to navigate science with a disability! But I’m excited because this is exactly what I wanted to do: get people talking about disability in STEM and sharing these tools with the public. We can’t create positive change if we don’t first understand what the obstacles are and how they affect individuals.

What accomodations would you add to our WishList?

There are some things that I’m afraid to ask for because of how the accommodation process works here. When I'm in the lab, I'm considered an employee, not a student. That means that my PI needs to purchase anything that I need, which is why I’ve bought a lot of things out of pocket. I’m uncomfortable asking, even if they’re small expenses. The pro of this is that because I’ve bought them, I can take them with me wherever I go next.

Something that’s more expensive that would be incredibly helpful is a chair with a high back. As someone with a lot of joint instability, especially in my neck, having back support when I’m at the computer makes such a difference for my pain, but that’s a more significant investment… in a perfect world, I would have that chair.

I think height adjustable benches should also be standard. They’re more expensive, but they benefit everyone.

What do you wish people knew about being disabled in STEM?

I wish people could recognize that everything I do is additive. Every action takes away spoons, takes energy, takes time, and causes pain. Physically being in the lab is not easy, even though I put on this persona that I’m fine. That’s out of necessity. If I didn’t hide the daily pain that I feel, I would constantly get asked “what’s wrong?”. That’s emotional work for me to have to explain that I’m having a bad pain day. For me, it’s easier to expend energy acting like everything is fine. You can’t understand it unless you’re experiencing it.

I’m constantly thinking about how I can maximize my time to be more efficient, because my time is precious. I know I’m going to run out of spoons at some point, but I don’t know when that point will be. But it’s going to happen. I’m at the point where if I have to walk somewhere in the building, I’m mapping the best route to walk in my head so I don’t have to make any trips twice. The #labdaptations are a necessity, they’re not just something I do for fun.

Finally, I wish we could reframe the notion of “doing a favor” to “providing a necessary accommodation”; this shift will help to ensure accommodations are being met. For me, there are some lab tasks that are incredibly fatiguing and difficult; I can perform the action, but it gets progressively harder with repetition. It had been suggested that someone might take over certain tasks for me, but that has never materialized. It’s on me to continually bring it up, and when I do, the response is ‘oh, you still need help with that?’. Well, of course I do! I didn’t magically get better. If these instances weren’t seen as just “helping out” or “doing Kat favor”, then I think it would be more likely that people meet the accommodation without my need for reminding or intervening.

How did you get into STEM?

I never intended to be a scientist. I went into undergrad thinking I was going to be a genetic counselor, because I like science communication and being able to help people understand what’s affecting them/ their families. This all started because I was having so many seemingly unrelated symptoms that nearly 20 medical specialists assured me they were “just from stress” or were things that I was “making up for attention”. In reality, they couldn’t provide answers as to why I was experiencing so much pain, or offer any treatments, in large part because the science isn’t there. So, I thought maybe I could be the person to look for these answers and help to fill gaps in our knowledge of connective tissues.

If you’re just starting on your scientific journey, I want people to know that it may be scary or daunting to not have a lot of visible role models. But I’m optimistic that science is changing. Disability is being actively discussed in academic journals. There’s EDI panels that didn’t exist five years ago. So, I’m optimistic that scientists with chronic health problems and disabilities will continue to have a voice, but it will take time and work. The best thing you can do to help this movement is actively discuss disability initiatives in STEM and read/share voices and perspectives in your workplace. We need to shift the mentality that scientific environments cannot be made accessible because they can be and part of that shift is recognizing what you can be doing to aid in promoting inclusivity and accessibility.

How can the #DisabledAndSTEM community support each other?

A friend and I started talking about how it would have been helpful to have a disabled/chronically ill peer or role model during our undergraduate studies to talk to or help navigate the accommodations process and advocate for oneself. So, we started a mentorship program, where grad students who identify as having a chronic health/illness or disability are matched with undergrad peers who share similar experiences, with the goal being one-on-one support. Most of our graduate mentors said they wish they’d had this during their undergraduate studies. Importantly, this program was an equally meaningful experience for the mentors; many stated they were glad they could use their experiences to help others and build community. I was with my mentee for four years, and being able to watch their growth from beginning to end meant a lot, both being able to be there to support them, and being able to see them learn to advocate for themselves.

You can find a catalogue of Kat’s #labdaptations in this shareable google slides link