Emily’s journey with Friedrichs Ataxia

Episode 114 of The On-Air Advocate

Original Airdate: March 1, 2019

Host: Tammy Flynn, Connect with Tammy on Facebook @theonairadvocate.

Guest: Emily Anderson, diagnosed with a rare genetic, progressive, neurodegenerative movement disorder, with a typical age of onset between 10 and 15 years called Fredreich Ataxia (FRDA).
 
Guest’s background:
While Emily was born with the condition, she did not start showing symptoms until the age of nine. Symptoms that include the following:
• Reaching with hands and arms was off.
• Her gait was off.
• Leg and feet pain
• Falling often

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It wasn’t until the age of 13 that Emily was diagnosed with FA. Now 21, the condition has progressed to the point that uses a power-chair to remain mobile. She has lost the use of her legs, and throughout her body. Because she is now reliant on a wheelchair, Emily has noticed a great need for accessibility for those with different challenges. The areas she noticed that needed improvements the most are as follows:

• The lack of public handicapped bathrooms and the lack of properly equipped bathrooms.

• The Handicapped stall being in use by people who seemingly don’t have any physical limitations (1 handicapped stall, to 12 other regular stalls available to the person without the physical limitation).

• The lack of effort being made to keep public areas within her community accessible ie. Clearing ramps of snow, and having access to handicapped parking spaces.

• Abuse of using the handicapped parking spot/parking too close in the space, or parking without a pass in general.

• The lack of automatic push-buttons for easy entry into stores, etc.

• Not enough space within the isles in department stores.

• Also struggles within her apartment with the lack of accessibility.

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Emily’s Personal Experiences

Emily has had so many experiences with lack of accessibility and instead of having her complaints taken seriously with an attempt to make the necessary changes to improve the situation so much is ignored. Emily has also witnessed the staff and/or employer of an establishment watching as she struggles with her wheelchair and does not offers to help, just stands by continuing to watch. Emily also talks about getting help from state services such as DVR (Department Of Vocational Services.) Where they helped obtain a hand-capped van so that she could continue to go to school.
 
This also inspired Emily to write an article for a local magazine to bring attention to these very important issues that prohibit her from being a productive member of society, as well as within her neighborhood. Emily also hopes that her overall message on accessibility reaches many in the able-bodied community as well. Emily loves bringing awareness to her condition vs. people showing pity toward her, or making ignorant comments. She also shares how different her life is in comparison to a typical 21-year-old. “I can’t live an average 21 year old’s life due to my physical limitations, as well having to be reliant on one parent who is my caregiver as well.”

When asked how she maintains her positive attitude Emily replies with the following:

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I want to stay busy, and writing helps me stay focused. I like writing about the truth.

Further Info on Frederics’ Ataxia
•  This condition is also genetic.
•  1 and 40,000 have this condition.
•  You can visit https://www.curefa.org For additional information on this condition.  

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Tammy’s Final Thoughts

• There are over 7,000 Rare Diseases.

• Between 25-30 Million Americans suffer from a Rare Disease.

• The differently abled community is one of the most discriminated againstpopulations in the world.

• We need to drive more public/employer awareness about our differently abled community.

• There needs to be stiffer penalties for those who choose to occupy the handicapped bathroom stall or take the handicapped parking space all because it’s more convenience.

 
You can read Emily’s article with Milwaukee Magazine here; https://www.milwaukeemag.com/essay-navigating-milwaukee-wheelchair/

 
Listen or watch Emily’s entire interview with Tammy Below:
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