Jerusha Mather is helping improve the lives of people living with disability

Jerusha Mather and her crusade to enhance the lives of people living with disability

disability

Jerusha Mather is a young extraordinaire. The Victoria University PhD candidate in biomedical science was selected for the 2020 L’Oréal-UNESCO for Women in Science (FWIS) Mentoring Program, where she will be mentored by a leading paediatrician at the Royal Children’s Hospital and Director of the Caring for Hearing Impaired Children clinic, Dr Valerie Sung.

As well as joining the Australian Academy of Science’s group of twelve STEM Women Changemakers, she lives with cerebral palsy and is a passionate advocate to improve access to medical education for people with disability.

Oh, and she’s also a published poet. Today, as the world marks International Day of People with Disability, Women’s Agenda spoke with the young scientist to listen to her ideas about disability, science, and race.

Today is International Day of People with Disability. What does this day mean for you?

International day for people with a disability plays a fundamental role in raising awareness for people with a disability. It enables strong representation and advocacy for individuals in this group. 

However, I think we should not wait for a day or event like this to amplify and elevate the voices of people with a disability. I think we should do this everyday, be that in super markets, food packaging or clothing designs, media, workplaces, schools, universities. travel. We can carry the mantle and voice of inclusion and be the change everyday. Inclusion matters. The more we raise awareness, the more the environment will methodically and systematically adapt to disability and accept them. 

You’re a PhD candidate in biomedical science. What made you want to study this area? 

I love the study of biological sciences. I became curious about my lived experience with cerebral palsy- athetoid. I began to wonder what could help someone like myself gain more independence and increase their quality of life. That is primarily why I fell into doing a PhD project on strength training and brain stimulation. I got through everything (ethics and a grant via cerebral palsy alliance) with hard work and persistence and then the pandemic meant I had to take another path. I was disappointed at first. However, I am relieved that I am able to continue to work on something. Now, I am doing a survey on barriers to exercise in adults with cerebral palsy. This topic has not been researched in depth yet and is equally challenging and important. 

I was also named a STEM change – maker by the Australian Academy of Sciences and L’Oréal  UNESCO mentee as part of their national women in science program. I feel so fortunate to be able to use these platforms to advocate for change for ambitious women with a disability. It’s rewarding and I am very inspired by all the wonderful people that I’ve met.

What are the greatest challenges you face in this space?

Like most PhD students, I find my work extremely challenging. I sometimes find it difficult to find the motivation to write and keep going especially when I have to write for long periods of time. I won’t lie, some tasks can be very mundane. Hence the independent nature of PhD life, some days I feel so alone and like no one truly understands. I sometimes lose sleep due to the workload anxiety. It is tough. Probably the hardest thing I have ever done. But I love a good challenge. 

What helps me keep my perspective and keep pushing through despite the challenges I face is the heart of my research – that is to make a real difference in my world, to support someone with their life, and to contribute to the body of knowledge. 

What do you think are some of the most common mistakes able-bodied people make about people living with disabilities?

I think some able bodied people still associate disability with weakness and hold a negative association with the word itself. Hence, people with a disability are often misunderstood and underestimated, This prejudice causes unwanted biases and the biases causes ignorance. However, disability is just another part of human diversity and should be a norm that we accept. 

Unfairly and shamefully, we live in a world that is built for abled bodied people that we often forget people with a disability in the way we design the world and create systems. We should be ashamed of this and start acting.  

When we completely fill the gap between abled bodied people and people with a disability, that is when we can wholly create equality and a better world for all people. 

How do you think about your racial background? How does it intersect with your disability, if it does? 

Being a coloured person with a disability certainly adds to the challenge of finding acceptance. There are layers of you that no one sees and properly understands. You are pressured by your culture and I think that can be very challenging for young people in particular. You struggle to find individuality. I’ve certainly found these things hard. In a lot of cultures, disability is a not accepted form of diversity and I think that’s very unacceptable and needs to change. 

In a lot of instances, it is a mental barrier, not a physical one. It is the way the person has been taught to think and look at life that needs to change. It is the connections that needs to take place and the conversations that need to be addressed to properly change this. Society needs to be educated and we need more active voices everywhere making loud noises about inclusion and awareness. 

Who was your greatest inspiration growing up?

My biggest inspiration is Dr Janice Brunstrom. She is a pediatric neurologist with cerebral palsy. She started and runs an amazing clinic in America for cerebral palsy. I admire her persistence, compassion, and fortitude. She has shown me that I can achieve anything if I put my mind to it even when challenges and adversity arrives. We should all be unstoppable like her and find the courage to follow our vision and dreams. 

What are some of the greatest misconceptions around cerebral palsy, and how do you fight against them?

Some people may see me talking and moving differently and think that I do not have the capacity to think and reason. Their first judgments of me are sometimes of that nature which is quite possibly due to the ignorance and lack of representation, especially in the media. I’d like to see this change. 

I have gradually developed an outstanding stamina and strength that stops them at their bias and finger pointing and educates them about it. Thus, this is not something I have developed over night. I struggled with this as a child. It has taken me years to develop this continuing level of confidence. 

I feel like the lack of awareness is what creates the bias. So the more people we actively educate, the less bias hangs around in the world. It’s our responsibility to educate and act. 

What are you hoping to achieve in the next few years? 

I don’t know what the future holds for me. But I hope it’s adventurous and exciting. I’d sure hope I can make a difference in my research and advocacy for medical students and scientists with a disability, by my example. I certainly hope with great faith that one day the doors will swing wide open for people with a disability to become doctors and seeing a doctor or scientist with a disability will be an acceptable norm. That is my uttermost desire for the world to see people with a disability achieve good things, feel supported and included, and grow into their full potential – that there would be more deeper consideration and advancement for accessibility packaging, clothing and equipment and more better support services for those with a disability who’d like to travel. There are many possibilities to unlock and unravel.

I am also a motivational speaker and published poet so I’d hope I can expand and my territory in this creative line and create an impact through my innate wisdom and expressions. I hope I can get married someday, if that is meant for me. I would certainly be open to that possibility and would love someone to share my life and journey with. 

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