Chacos: Disability and the road to humanity
If you’ve ever cared for someone with a “disability,” you know the outdated label hurts more than your ears. The word ignites the deepest parts of you because it can be the first sign of discrimination calling you to support someone with an ability that falls outside the average bell curve on a variety of metrics we’ve come to agree upon. And as someone who’s school once found her intelligence to reside on the fringes of the wrong side of the curve, I can attest my disdain for any label that places someone behind the starting line.
Many of us feel obligated to call out lightning rod excuses that deprive anyone from basic human rights and access to equitable services those without disabilities receive. For those with different abilities, some of life’s most fundamental experiences are riddled with barriers of exclusion. This can make supporting an individual with a “disability” a full-time job.
Family and loved ones generally bear the majority of financial and emotional responsibility trying to access the things most of us take for granted. Caregivers are always on the clock focused on the things we don’t have to think too much about. Then they moonlight by fighting for basic healthcare and asking for a fair and equitable education that everyone else receives. It’s their side-hustle, just as important if you want loved ones to have meaningful contributions to society and continuity of care.
Eventually, the government is forced to step in when society won’t step up on its own. For example, the Individuals with Disabilities Education Act (IDEA) passed in 1973 and permits a child with a disability to receive a free, appropriate public education in the least restrictive environment. In addition, the American with Disabilities Act (ADA), a civil rights law from 1990, increases access and opportunities for those with different abilities. Without such laws, individuals, schools, and businesses would be allowed to openly discriminate on the basis of ability alone. Not too long-ago, children of all ages would attend school, if at all, stuffed in the broom closet, with the only common denominator between them being the prefix “dis” before ability.
Families and caregivers are the first to admit there is added responsibility that someone with different abilities places on other individuals, schools, businesses, and the government. Secondly, they are acutely aware that modifications to the norm appear unfair. What looks to some as a hand out to the front is really only a hand up to the start. Lastly, they also believe there is a noble responsibility to shatter roadblocks and help create access and opportunities for others.
Unfortunately, those who advocate for those with different abilities know that discrimination is most easily seen at the local level. It lurks below the surface of many inconspicuous policies, programs, and campaigns. For example, there is a battle over a 126-acre parcel of land northeast of Carbondale between Ascendigo Autism Services and the Missouri Heights homeowners where Ascendigo’s proposed summer camp and year-round activities center sits. Many in the rural area oppose the plan in their backyard. The arguments the residents give sound reasonable at first, like stating that the location is incompatible with the environmental impact Ascendigo would create. Other arguments ooze with such obvious discrimination it’s not worthy to print. In the end, every reason against the proposal reinforces the struggle advocates routinely encounter when caring for people with “disabilities.”
If a community of rural homeowners could come together to find ways to courageously build everyone up working toward inclusion instead of tearing them down, faith in humanity may end up being restored just a little bit.
Andrea Chacos lives in Carbondale, balancing work and happily raising three children with her husband. She strives to dodge curveballs life likes to throw with a bit of passion, humor and some flair.