Ableist or Advocate?

 Ableist or Advocate?

By Kami-Leigh Agard

This column was conceived in 2016, and since then, I’ve received both heart-warming reviews and, well, the opposite. Interestingly, the most eloquently expressed caustic comments accuse me of being an ableist. Just this past week, in response to my column, “Rewired For Autism Swings a Huge Impact—PT 2—Vaccines,” which addressed, not opined, the controversial debate about autism and vaccines, I received this: “As a neurodivergent person and intersectional advocate, I have to voice how deeply upsetting it is to witness your posts—but I guess that may be what you want for engagement’s sake…” One would assume that after penning scores of columns in the past eight years, I would have tougher skin. However, because I’m hot-wired, I immediately went through a cacophony of emotions—livid, defensive, sad and then defeated. (Oftentimes, I think if I had a fraction of former President Donald Trump’s unabashed grit, I would be bullet proof [no pun intended]). So, what is ableism, and why do I believe advocating for your child’s services, healthcare, education, alternative teaching methods and therapies—does not make one an ableist?

According to the Center for Disability Rights, ableism “is comprised of beliefs and practices that devalue and discriminate against people with physical, intellectual, or psychiatric disabilities and often rests on the assumption that disabled people need to be ‘fixed’ in one form or the other.” The effects of ableism on autistic people include underemployment, mental health conditions and victimization.

However, does advocating for your special-needs child’s independence and quality of life make one an ableist?

As repeatedly defined, autism is a spectrum. I usually refrain from using the terms: “high-functioning” or “low-functioning,” but in reality, how would you describe an autistic teen who is nonverbal, still wears diapers, does not read or write and can’t cross the street independently? Now, this teen may be a fantastic athlete, can sing in a choir of angels, but when it comes to Activities of Daily Living (ADLs: everyday tasks that people perform to care for themselves and their surroundings), they are not on par independence-wise with the average 16-year-old or so-called “high-functioning” autistic individual.

Searching for therapies or alternative teaching methods for our children does not mean we’re trying to cure autism—we’re just exploring every possible avenue for them to live life to the fullest—wherever they are on the spectrum.

For example, regarding ABA (Applied Behavior Analysis, a type of therapy focusing on improving social skills; communication; adaptive learning skills, such as fine motor dexterity, hygiene, grooming, domestic capabilities and more)—I was particularly touched by the following from Eileen Lamb, founder of The Autism Cafe, who shared the ups and downs of raising a severely autistic child while being on the spectrum herself:

“An autistic child grows up in a world comprised almost completely of neurotypical people, and they have to learn how to function within it… The biggest criticism about ABA therapy is ableism, discrimination in favor of able-bodied people. I don’t agree that ABA therapy is ableist. You can help someone without changing who they are. My son isn’t in ABA therapy because we want him to be normal. We want him to be safe, independent, and to learn to communicate, to decrease his, and yes, our frustration… I’m not trying to ‘fix’ Charlie’s autism.”

Currently my daughter is in a private school centered around Floortime, an intervention used to promote development through play. Coming from both a strict Catholic school and NYC public education background, it was ingrained in me—the more structured the school, the more structured the child. However, my daughter’s dad disagrees. He feels that she learns better through unstructured play. As parents, all we can do is explore every avenue, reaching for the stars for our special children. We’re not trying to cure what makes them different—but to empower them, not just with managing the daily routines of life, but to excel at their God-given purpose. And I’m not just talking about brushing one’s teeth, getting dressed and tying shoelaces.

Thank you, dear readers, for continuing to read this column, in which I give a bird’s- eye view of MY experience parenting my beautiful autistic daughter, while providing critical information for parents navigating the seemingly daunting maze of schools, healthcare, NYS services and more.

For a calendar of Rockaway Beach Autism Families upcoming monthly family support group meetings and special events, visit Rockaway Beach Autism Families on Facebook/Instagram, or email: kami@rockawaybeachautismfamilies.org

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