The banner shows a photo of Aerilyn. She wears glasses and smiles
Disability & Accessibility, Diversity

Ankylosing Spondy What? An Invisible Disease (Aerilyn Medina: Disability Awarness Interview)

Banner reads, "More than meets the eye: interviews with the disability community."

Welcome to the second installment of a series that I’m calling: “More than Meets the Eye.” Each week of the summer (and possibly into the fall and winter months, depending on the number of responses I receive), I am honored to share with you interviews from members of the disability community.

 

The goal of this project is to raise awareness about the diversity of the disability community. The words and ideas expressed in the interviews belong to the participants, not me. This project is welcome and affirming to all members of the disability community. By sharing our stories, we can develop empathy and understanding for one another as we all travel throughout the journey of life.

 

Introduction:

Aerilyn is 35 years old a member of the disability community. She is a disability advocate who is passionate about making the disability community more inclusive. For this reason, she founded  OARCID Services. You can find out more about her and her work at the following links:

Aerilyn’s Personal Blog: https://whimsyinx.wordpress.com/

Aerilyn’s Business Website: https://oarcidservices.ca/

 

You can also connect with her on Facebook or Instagram. Her instagram handles are aeriekm17 and oarcidservices . She can be found at the following two Facebook Links: OARCID Services and Aerilyn Medina

 

 

 

Interview with Aerilyn Medina

The banner shows a photo of Aerilyn. She wears glasses and smiles

Could you share a little bit about your disability? In what ways to you identify as a member of the disability community?

I have a few disabilities that interact with one another, and they are all non-evident unless I need to use an assistive device. My main disability is called Ankylosing Spondylitis (AS) and with it came Fibromyalgia, I also have a mental health disability called  Bipolar 2, and a learning disability where my visual centres do not connect with my motor centres which impact my ability to read and write. AS is a painful autoimmune disorder that has no cure but can be slowed using biological medication. It impacts every facet of my day, as my day is determined by the amount of stiffness and pain I have, which is mostly in the spine and hips but affects the other joints like fingers and knees. In some cases, it can affect vision due to inflammation in the eyes called iritis and if not treated quickly a person can become blind. I have lost 40% of my vision in my right eye because at the time we didn’t know I had AS and it was one of the symptoms that lead to my diagnosis after 8 years of fighting for the cause of my pain.

 

I identify as a member of the disability community because I view myself as disabled because of the social and societal expectations of what people should be able to do, and the exclusionary nature of society’s infrastructure. I use a cane or wheelchair when my pain is too much to handle and rarely are places accessible. I need documents that have optical character recognition for my screen-reader and rarely do I get such documents, and websites are just as difficult to navigate.

Even though I look healthy and able, I’m still disabled. I had dealt with a lot of internalized ableism to get to the point where I identified openly as disabled, and at times such as finding work, I still struggle with mentioning I have disabilities. However, connecting to the disability community has provided me with a wealth of knowledge and support that I otherwise would not have, and I’m grateful for the people that I’ve met over the years.  I’m sure there are many people out there that can empathize with this, and who are still struggling to connect to the disability community.  

 

 

What do you think people see when they look at you?

I know people immediately judge on the fact that I’m overweight, white, and if I have an assistive device that I’m disabled, but most of the time people assume my disability it due to my weight, even my medical professionals. I was denied treatment for 8 years because my weight was blamed every single time I went to a doctor’s office, hospital, or specialist for excruciating pain. People tend to assume I’m not disabled most of the time because I usually don’t have an assistive device unless my pain is unbearable, this makes it difficult for me to get my accessibility needs met most of the time.

 

What do you wish people would see when they look at you? What parts of your identity are most important about yourself?

 I wish people would understand that being disabled is a huge part of my identity, but there is so much more to me, such as me being Irish, that I enjoy nature, writing, and connecting to people.

I want people to know that I tend to seem tense, but I’m very caring and that I will do anything to support a person in their time of need. Also, I’m very open-minded, conscientious, eager to learn, and when people get to know me apparently from what I’ve been told that I have a chill vibe despite all of my struggles.

 

 

What common misconceptions do people often have about your or your disability? What do you wish people understood about your disability?

AS is considered a male’s disease, and some doctors still believe this to be true, and I wish this misconception did not exist because it makes it exceedingly difficult for people to be diagnosed with AS. People also assume that it’s just the same a regular arthritis, and while arthritis is painful, AS is completely different and difficult to treat.

Some people tend to think that people with AS are lazy or don’t want to work, but this is far from the truth. People with AS want to go out, want to work, and be connected to people, but the pain and fatigue makes this very hard.

The biggest problem with having an invisible disability is the fact that people challenge you on whether or not you are actually disabled and never take your word for it.

I despise needing to prove my disability all the time to both non-disabled and disabled people especially when I use my accessible parking permit.

 

 

What makes you happy? What are your passions or your joys in life? Can you share a little bit about your big picture?

My biggest passion is to eradicate ableism in the disability community, I even created a business to do just that by teaching about inclusion and accessibility. I really enjoy supporting and helping people it’s why I became a Child and Youth Care Practitioner; I love connecting with people and learning from them. I also enjoy music, creating art, and playing online video games. I met my husband in a video game which he was from California and I’m from Canada, and we have been now married for 6 years. My big picture is to be working in accessibility and disability and maybe even become a professor on the subject, who knows.

 

How has the COVID-19 pandemic impacted you as a member of the disability community? What do you wish the rest of the world understood about your personal experience of today’s post COVD-19 world?

The COVID-19 pandemic had affected my ability to see my medical care team which makes getting my medication and blood requisitions difficult. It’s also harder to explain disability related symptoms to the doctors and have them help me. This pandemic has also made me feel very isolated and lonely, because I can’t go visit family or friends, and even though places are opening up, I’m on an immune suppressant so I can’t disregard that factor so I’m still isolated. What has been a saving grace during this whole outbreak is technology and being able to Skype or Zoom folks which helps reduce the loneliness a bit, and being quarantined with my husband has been great for reconnecting with one another since he has been off work. Although we are very financially tight at the moment which can make it difficult for me to afford some of my medication that is not covered. I’m very lucky that some of my doctors gave me medication samples to help lessen the stress with getting medication. It’s been really difficult, but I try to find ways to keep busy during this time and video games are a huge part of my self-care.

 

Do you have a business, book, website, or creative project that you would like to talk about? Feel free to share about what brings you joy! Are you working on something right now that you’re really excited about?

I am really excited about my self-made business OARCID Services which stands for Organizing Accessible Resources & Connections on Inclusion & Disability. I really enjoy spreading awareness and advocating about disabilities. I want people to know that they are not alone in their journey, and that people are fighting for accessibility and rights. I hope that I can reach my overall goal of having a community centre where I can employ people with disabilities and really reach others. But for now small baby steps in helping businesses/organizations become more accessible and inclusive.

 

Please be sure to check back next week for another interview in our summer disability awareness series, More than Meets the Eye. 

 

More Disability Awareness Posts

Jessica Karim: Vlogging to Change the World (More than Meets the Eye #4)

Letitia Bouwer: More than Meets the Eye #3

Blind People Write Books! Interview with award-winning author J.E. Pinto (More than Meets the Eye #2)

Blind with a Vision: Carolyn McGee (More than Meets the Eye #1)

 

 

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My name is Rev. Rebecca and I blog about faith, books, and disability awareness. Please subscribe by typing your email into the box labeled, “Subscribe,” so that you never miss a post! I am also  the author of the Through My Good Eye: A Memoir in Verse and The United Methodist Church and Disability. 

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2 thoughts on “Ankylosing Spondy What? An Invisible Disease (Aerilyn Medina: Disability Awarness Interview)”

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