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Member Spotlight: Ashley Garcia
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Courtesy of Ashley Garcia[/caption]Muscular Dystrophy Forum Member Spotlight features Ashley Garcia
1) Can you start off by sharing a little about your life with Muscular dystrophy, the type of MD you are diagnosed with and at what age you were diagnosed?
As a young girl who was born with an extremely rare case of Muscular Dystrophy with no confirmed diagnosis, I grew up with a lot of questions but also a lot of determination. I have always been one to never let my disability define who I am but let it teach me to push myself further than what the doctors expected of me and my life. From being someone who was told they would not live past their first birthday, to 22 years later finally getting that diagnosis of Titin Myopathy founded by research due to the funding of the ALS Ice Bucket Challenge. So unlike others who have an identity within their diagnosis, I finally found mine much further along in my life.
2) What symptoms did you experience that lead you to believe you had Muscular Dystrophy?
Well, the doctors described me as a “floppy baby” meaning that my muscle weakness was very visible from birth. I had foot and hand retractors, meaning my muscle in my hands and feet were so tight it was pulling up my ligaments at the joint. Not being able to walk at a young age was a very clear sign that this was something that was going to affect my life. I didn’t start walking until I was 12 and the muscle aches in my body would cause pulling and tears, causing physical pain and weakness.
3) In what ways has Muscular Dystrophy changed and/or affected your life?
Of course my physical limitations were something that I knew I had to work around but I feel like Muscular Dystrophy has given me more reason to push and fight harder for the things that I want. There are a lot of things that I aspire to achieve and sometimes I have to accommodate my dreams because of Muscular Dystrophy. It has affected my life substantially in everyday tasks and being able to live life independently. I strive for independence but I also know because of MD there are some things I can’t do alone.
4) What has life with Muscular Dystrophy taught you about yourself and the world around you?
Living with Muscular Dystrophy has taught me that a lot of the times people aren’t going to make accommodations and you have to be your own advocate. You have to know your situation and push through the hardships that come. However, most importantly it has taught me to fight for what I want, never letting the disability define who I am but using it as a tool to motivate myself and others.
5) What sort of language do you use when describing yourself with MD? For example, do you prefer first person language, being described as disabled or chronically ill, wheelchair bound or not.
When I identify myself with MD I say that I am physically disabled and wheelchair-bound, It’s only a description and fact. Being identified as disabled does not bother me. I am limited by my physical capability but it is only one aspect of my life, one fraction of who I am. I am disabled but I am also strong.
6) What are some ways you maintain your mental and physical health besides taking medication and visiting doctors?
I think it is important to live a life seeking out the positive things that many people might see as unfair as well as understand your worth and the things that motivate you and push you forward through those inconsistencies of doubt and loss of self within the disability. For me that’s way more important than any medication I take. Mental health is so important and affects many. Without special care it could be more detrimental than any of our physical limitations. Then again, Aleve and lazy days in bed always helps too.
7) How has a lack of education about disability, media stigmas and old ideas about people with disabilities affected your life?
There is a stigma and stereotype when it comes to people living with physical disabilities. It has been hard having to overcome the ideals that people have and what they expect of you. I think the lack of media representation within all forms is something that has allowed this stereotype to thrive in the changing modern acceptance of diversity. Disability is one of the few things likely removed from the spotlight and believed unworthy to have its story shared by storytellers who actually live it daily. Often times, people think that just because you have a physical disability you must also not have the mental capability to live a normal life. A life where worth ethic, sex and ultimate fulfillment of life must be taboo to those living with physical disabilities. Stereotypes suck, let’s help to change that.
8) What made you want to create your YouTube channel and what do you hope to accomplish by being a YouTuber with a disability?
I started my channel Girl on Wheels almost a year ago now to help fight against the stigma. Before I got the idea to start my channel, I was sharing my life on my Instagram @girlonwheels_95 allowing for the conversation to start. I had received many questions and a lot of interest about my life with a disability, so I decided why not continue what I started there and bring it on a bigger platform so that it could reach more people. I wanted to help bring forth inclusion and diversity within social media to vocalize my life with a disability and help educate those who are curious and engaged to learn. I am an open book when it comes to how Muscular Dystrophy affects me in every aspect and I am willing to answer the questions that many people are afraid to ask. By starting this I hope to help normalize what it means to be disabled. Ultimately, by showing my life and the things that I enjoy helps to shed light on the things we as people with disabilities can do rather than the things that limit us.
9) What advice would you give other people with Muscular Dystrophy to live a happy and fulfilling life with a disability?
Do the things that give you the most happiness and never let what people say or your thoughts stop you from pursuing a life that is fulfilling. Yes we have limitations and those things can be hard to manage at times but it’s our life and we should use it to motivate. It’s okay to not be okay all the time but don’t stay there too long. We are more than what people see initially. We are more than the stereotypes and our limitations that try to define us. We all have stories and experiences worthy of being told, so hold onto yours and keep pushing forward because you are worthy.
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