2019-08-20 18:06:48 来源:参考消息网 责任编辑:余诗泉
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Our Disabilities Have Made Us Better Scientists 残疾让我们成为更好的科学家

Gabi Serrato Marks,Skylar Bayer 加比·塞拉托·马克斯 丝凯拉·拜尔

Starting a graduate degree in science was one of the most exciting things to happen to either of us. But while we knew that graduate school would be difficult, both of us experienced medical hurdles early in our PhD programs that we never expected. Skylar has a heart condition, polymorphic arrhythmia, and had an implantable cardioverter-defibrillator inserted that ended her scientific scuba-diving career. Gabi has Ehlers-Danlos Syndrome, a collagen disorder that causes widespread pain, especially during lab and field work.

While our medical conditions have challenged us in different ways, we both have noticed that scientific research is rarely designed to accommodate scientists with medical conditions or disabilities. That could be understandable if we were part of a tiny group, but around 26 percent of adults in the United States have a disability. Scientists with disabilities have so much to offer: we have diverse, creative and unique ideas that are important for pushing research forward. We, along with other scientists with disabilities and medical conditions, have found success in our careers, but only because we have had access to health care, emotional support and institutional backing.

In fact, we feel that we can be better scientists because of our challenges, not in spite of them. When Skylar couldn't scuba dive for her field research anymore, she could still design dive plans and carry out other aspects of fieldwork as well as laboratory work and computer modeling. She focused heavily on project management, a skill that will serve her throughout her career. Ehlers-Danlos syndrome is rare, so explaining the condition frequently has honed Gabi's science communication skills. Consequent to her condition, she's also hyperflexible, which comes in handy when she needs to squeeze into tight spaces in caves during fieldwork. More importantly, we both have learned how to advocate for ourselves and persevere through challenges, both in our health and our research.

We're not the only ones who see benefits that come from our differences. Some people with mental illness and neurodivergence have found that thinking differently can be helpful in their roles as researchers. For example, one study found that autistic traits were linked to new idea generation and creative problem solving, and there has been extensive research on bipolar disorder and creativity.

Nonetheless, we are only able to use our creative skills when we are healthy enough to do research. Both of us have found that we have to be particularly vigilant about making sure our access to health care and health insurance is consistent and supportive. We have become acutely aware of both the financial and time costs of visiting specialists regularly, and the emotional weight of making decisions with our health in mind.

Richard Mankin, an entomologist at the U.S. Department of Agriculture and the president of the Foundation for Science and Disability, has had similar experiences in academia. He was born without certain muscles in his legs and uses crutches to get around, but his condition didn't start to impact his mobility severely until the end of graduate school. At the time, he didn't think he really needed a support system, but now says that supportive colleagues and friends pushed him to get the help he needed with his mobility. He gravitated towards working for the government because of the stability in health care it offered.

However, unrelenting hard work is what has made him successful, he says. He feels that he's had to work extra hard just to show he's capable of being as successful as a scientist without disabilities.

We remember being terrified that we couldn't be “successful” scientists because of our health when we were first diagnosed. But we now know that there's more than one kind of “successful” scientist, and that those of us with disabilities, differences in thinking, and medical challenges are well-suited for rich scientific careers—as long as we have true access.

开始攻读理科硕博学位对我俩来说都曾是最令人兴奋的事情之一。虽然知道读硕读博会很艰辛,但我俩在博士课程早期都遭遇了我们从未料到的疾患难关。丝凯拉的心脏出了问题,患有多形性心律失常,她安装了植入型心律转复除颤器,这让她无法再为科研进行水肺潜水。加比患有埃勒斯-当洛综合征,这是一种胶原蛋白紊乱疾病,会引起浑身疼痛,尤其是在实验室里和实地研究期间。

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