ahh c'est moi ! On the Université de Bordeaux website! Doing science!
My wonderful new boss interviewed me for a short profile dedicated to international students at UBx. and she still hired me even after I cried in her office talking about my experience... Read the full article by clinking here or on the photo above!
Now, can somebody just fully fund my research forever s'il vous plaît ?
In all seriousness, I feel very honored to be included among the other students and researchers profiled at the University of Bordeaux after completing my Masters (and graduating with honors!). I'm especially excited to start helping advance the partnership between the University of Bordeaux & the University of Cincinnati! There are great things in the works for future international students of biology and life sciences.
But research has not been an easy (nor accessible) path to take while living with chronic illness. There are both literal and figurative barriers that prevent disabled students from becoming scientific researchers.
To this day, I often remember a specific meeting with a pre-professional adviser that I had at the end of the first semester of my freshman year. At the time, I was struggling to complete my general chemistry courses because I could not actively participate in the lab. The brand-new laboratory facilities were built so that folks could stand while they do experiments at the bench. Since I was in a wheelchair, I could barely peek over the counter to see the equipment, and risked dumping dangerous chemicals into my lap if I tried to complete the protocols on my own. To comply with ADA standards, a folding table was put in a literal corner for me to work at. Away from the fume hoods, away from where the other students were working. Without doing the experiments - without this hands-on learning - I was absorbing the material at a limited capacity compared to my peers. I studied the digital textbooks and class notes as much as I could while also dealing with recurrent infections, hospitalizations, and the general stress of a first-year college student. Finally, when that first final exam came, I failed.
When you fail your classes as a freshman, you are automatically put on academic probation. This led to a mandatory meeting with an academic and pre-professional adviser. I remember being so embarrassed and devastated by this epic fail of a first semester. I sheepishly rolled into his office and braced myself for his reaction. I was afraid of losing my scholarship.
I know that he was coming from a good place. I know that he believed he was giving me valuable and professional advice. But that day, he told me that I should consider switching to an "easier" major. That I should give up science. That I would realistically never be able to do research.
I wish I could say that I sped out of his office and never looked back. But in the absence of my self-confidence - and because I simply didn't know what was realistically possible - his words found their place in my head. I knew the path with least resistance equated to more time out of the hospital. I knew I needed to graduate. So I made a decision. I was going to let my naturally diverse interests gravitate towards other disciplines... and majors with classes that were offered online. I chose to dive into the diverse world of communications. This way, I was not straining myself physically to get to class just to reach the learning material, and instead I could study the interesting coursework from my own bed horizontally. safely.
To this day, I still take offense at his request to switch to an "easier" major. I do not adhere to the belief that being a scientist requires superhuman skills that only a few elite are able achieve. While I do think certain people will be more or less interested in certain fields, I believe that anyone can learn anything if they're given enough time and support.
Anyway, after a few more semesters, several years of trying out new treatments, and the discovery of the POTS Treatment Center, I eventually worked to regain partial mobility. There were still no structural changes made to the brand new non-compliant laboratory benches. But now, I could stand at them. For at least a few minutes at a time.
So I tried again. Perhaps I would have failed general chemistry for a second time if it weren't for a new lab partner who so fiercely included me, or if my professor hadn't given me the chance to retake it in the first place. But I passed. And eventually took on other science courses. When I was either in or out of my wheelchair, I felt myself excluded or included, respectively. My peers were never cruel, but the inability to navigate physical barriers in my wheelchair seemed to give others the permission to avoid working to overcome any emotional or societal ones.
The only accessible seating in the 400-person auditorium for my genetics lecture was in the very back row. I sat there, alone, a hundred feet away from the professor, the students, and the powerpoint. So on the first day of class, as we finished lecture and separated into different classrooms for lab groups, I was understandably nervous. Like any other student. But perhaps unlike the other students, I had spent a good 15 minutes in the bathroom trying to pump myself up before I wheeled into a new working group for lab. I had tried and failed a lab before. I had to be confident in myself that I could show up and try it again. After the TA finished checking off attendance, I realized my name hadn't been called. I raised my hand in defiance. I was sure that I was in this lab. Because I signed up for this class. Even though I'm in a wheelchair. Even though I'm not always in a wheelchair. Because I am confident that I can do this! Because I'm in this lab, dammit! And finally, I was just in the wrong room.
The next lecture, a fellow classmate came to the very back of the auditorium to sit with me. She poked fun at me for showing up to the wrong lab room like a typical, awkward "freshman". We talked about life and school and science, and she shared that she worked for the Cincinnati Children's Hospital. I expressed my seemingly impossible desire to work in research, and she connected me with her boss. My first (and very dear) friend from class helped get me my first job in clinical research. Her willingness to vouch for me and advocate on my behalf opened the door to research.
And when using a mobility device, closed doors are very much both a literal and metaphorical problem.
If there was not an ADA-compliant paddle to automatically push open the door, I couldn't get through (at least not without bloodying my knuckles). In the every-day life, most people are generally polite and ready to help open a door, like they would for anyone with an armful of groceries or babies or whatever. But some folks - even those with the best intentions - will unwittingly open the door in a way so that they block the path. They stand there with their arms outstretched through the frame, their toes almost directly under your wheels, and despite your polite and persistent plea to 'thanks! but go on ahead', they then get angry or upset that you just won't accept their help. And you're stuck. You still can't get through the door.
To me, this phenomenon parallels to working somewhere with a chronic illness. It's like, sure! There are disability accommodations! There are people willing and ready to help! There are ramps to be built and stools you can sit on at the bench. But needing to take time off for recovery? Well, there are still deadlines. There are only so many sick days an employee can have. Accommodations are not one-disability-fits-all. To highlight this horrible and ironic reality: I've been fired from a part-time job with "disability" in its title.
There are still many disabled employees and students who are discriminated against because of things that we just consider to be standard.
The problem is that there will always be structural barriers and noncompliance with ADA laws designed to prevent this sort of disability discrimination. The problem is that I have a chronic illness and with symptoms and treatments that will always vary.
The problem is that people will always have preconceived notions of what is realistic. What is possible. What is just.
With these compounded problems, there is no surprise that so few disabled students survive academia or enter the workforce.
While 15-22% of the adult population lives with a disability, the disabled population of undergraduate programs in the US barely reaches 10%. At the graduate level, only 4% of Master students with disabilities are in STEM fields.
Out of ALL the science and engineering PhDs each year, only 6% are awarded to disabled students.
Even beyond academia, out of all the physical science occupations (including all degree levels awarded), disabled people only make up 10% of the entire STEM work force.
And according to these NSF statistics, the median annual salary for scientists employed full time?
Well, on average without disability it's about $75,000.
With a reported disability, the average drops to $66,000.
These statistics get even worse when you break them down by race and gender.
Disability rights are civil rights. And to even begin to fully understand the consequences of our institutional discrimination, we desperately need a societal shift in how we view disability. I believe all people should have access to education.
Recently, the Disability Intersectionality Summit launched a campaign, "Access is love."
"Access Is Love aims to help build a world where accessibility is understood as an act of love, instead of a burden or an after-thought. It is an initiative to raise awareness about accessibility and encourage people to incorporate access in their everyday practices and lives."
And I believe love is a verb! Right now, I'm following along a study lead and developed by my Papa and other elders at his church titled, "God is Love". The message is simple - to love others with this same unconditional love. But as humans, we fail. We can dedicate our life to study and prayer and still not master it. But we can dedicate our lives to try!
Even if we have the best intentions, we can always do better. We owe it to each other and to our society to actively recruit and support disabled people in STEM fields.
One way to start is by simply educating yourself on these issues, listening to the experiences of others, and donating to causes that directly support disabled people.
Perhaps consider sending a certain someone an "Access is Love" shirt as a belated graduation gift... or get one for yourself or someone else! There is a cheesy holiday right around the corner that gives you the perfect excuse to spread the love and do some good.
Sara Spins is still currently raising money for a service dog for Michelle, a fellow disabled doctoral student at UC.
There are many ways that we can love each other better. There are also many ways that we can f*ck it up.
The one thing I know is that we have to keep trying.
The most important lesson I've learned in the lab is how to fail. For example, my electrophysiology experiments can take up to 8 hours... I can tediously prep and practice over and over to try to do everything right... but at the end of the day, it still might fail. And that's okay. In fact, scientists spend a great deal of time just completely and epically failing! It happens so often we have a name for it, "experimental error". When we do an experiment, we just already know that there is going to be some sort of problem. Perhaps it's human error, or systemic, or just completely random. Regardless, we always plan ahead of time to consider these inevitable failures. I think some of the most brilliant scientists I know have taught me to welcome and work with them! Serendipity is perhaps one of the most powerful catalysts of scientific innovation.
So, I think when it comes to experimentation, much like in life, failure can be the greatest teacher.
I've failed plenty. I know I'll fail some more. But at the very least, if I'm the first disabled scientist in a room to try and fail and try again, I hope that by talking about my experiences I will make some progress with both the literal and figurative barriers to make way for the next disabled scientist to show up and give it a try.
Sharing personal thoughts about neuroscience, travel, and health.