Disability in an Ableist Society

 

       

Coming to terms with the fact my daughter is disabled was an emotionally challenging road. Although I rarely discuss it, there are still days I struggle with the reality that is her life. A significant part of that struggle stems from the ignorance in the world around us, whether that ignorance is in the form of attitude or lack of education. Today, compliments of the rantings of a political commentator who needs to check her attitude and gain some education, I am fighting the struggle.

Last summer, one of Jayde's healthcare professionals, attempting to justify why she felt Jayde no longer needed care, stated, "She went to Chicago, so I assumed she is doing better." If you follow Jayde's journey, you witnessed a glimpse of what it took to prepare her for that trip. Besides the comment being infuriating, it was ableist. However, it wasn't the first ableist comment our family has encountered. Sadly, I'm confident it will not be the last. 

Jayde-Rhiannon has many tools that make her journey more comfortable and accessible. Jayde uses a shower chair, ring splints, a brace for her hands and knees, and compression socks. Her disability placard arrived on October 21, 2017, two days before her sixteenth birthday. 

Then there are the two vital tools necessary for her survival, her port, and her wheelchair. While Jayde still has the ability to walk, there are more days than not that if she were to leave the house, her walking is a safety issue at best. Her wheelchair allows her to conserve her energy and to safely enjoy life for more than ten or fifteen-minute intervals. I clearly remember the first time we conceded and rented a wheelchair for Jayde. Physically, it was the best decision for everyone involved–especially Jayde. Emotionally and mentally, however, for Jackson and me, it was heartbreaking. That was in 2016. Today we are grateful she owns two wheelchairs that allow her the accessibility and mobility she otherwise would not have.

For a minimum of three days a week, Jayde's port is accessed, allowing a line of fluids to run through her body, supplying her with the additional and necessary hydration her body requires because she has Postural Orthostatic Tachycardia Syndrome and Myalgic encephalomyelitis/chronic fatigue syndrome. Hydration she cannot intake otherwise because of her Superior Mesenteric Artery Syndrome. Her port also allows her and I to administer medication intravenously, providing an immediate respite from the nausea and pain that plague her every waking moment.

Her port and wheelchair make clothing options interesting. To the average person, it may seem trivial, but I remember my excitement when I discovered that Steve Madden made "Dr. Martens" with a zipper on the side. But for Jayde, these zippers signify she does not need to struggle or ask for help when tying her shoes because her Ehlers-Danlos is not cooperating or she is too dizzy to bend over. While I am relatively confident the design was not intended to be adaptive clothing, for Jayde, that is precisely what her favorite pair of shoes are.

Do you know what adaptive clothing is? It is clothing specifically designed for anyone with a disability. June 2019 was the first time I searched online for adaptive clothing–two weeks after Jayde had her port placed. My findings were irritating and frustrating. The clothing looked like something a seventy-year-old woman would wear, and the quality of the material was subpar. I refused to purchase anything like that for my seventeen-year-old daughter. Over time, we created an adaptive wardrobe to suit Jayde's needs. Still, I imagine a world where I can search the internet and purchase any clothing she desires. Clothing that is comfortable, affordable, and fashionable for someone her age. 

Life has taught our family that disability does not discriminate against race, sex, or age. You may be born with a disability, or you may wake up tomorrow and have a driver make an illegal U-turn in front of your vehicle, forever changing your life. No one is immune, but everyone deserves to be included. Inclusivity is not a ridiculous fad or a political agenda but a way of life. Inclusivity has not gone too far. If anything, it has not gone far enough.

Candace Owens, we were unaware SKIMS had created an adaptive clothing line, but my daughter and I thank you. I can assure you people in wheelchairs do not believe this ad is stupid or ridiculous.

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