Today is December 3, 2021, the International Day of Persons with Disabilities. I am going to be super honest about this, to me, throwing messages out there that the disability doesn’t exist is not inclusive at all and it’s disrespectful to many.
Telling the parent of a child with a disability that affects his or her behavior that disability doesn’t exist is aggression. If you have never experienced an emotional crisis that involves frustration and desperation because your child doesn’t have the ability to self-regulate… don’t you dare to say that disability doesn’t exist, because mental health disorders are one of them, and unless you have experienced it yourself, you have no clue of what it implies.
Telling to the parent of a child with a significant physical disability that disability is in our minds is offensive, as much as it is to pretend or assume that a child that doesn’t speak fluidly or resolve mathematic equations is because their parents were not involved enough or they were no good parents.
That never-ending confusion that denotes ableism instead of inclusion needs to be something to reflect on today and every day, because still, we are unconsciously trying to “cure” or “fix” disability while we keep sending these conflictive messages to society. On one side we want to convince everyone that disability is a blessing with the wrong name, but on the other side, we cannot stop trying to fix it while becoming obsessed with finding the “cure” or the way to demonstrate that doesn’t exist.
I don’t celebrate disability as I don’t celebrate Down syndrome. I do celebrate people, and obviously, I do celebrate my children. I do celebrate those who accept their personal circumstances as they keep fighting to transform the ableist systems that attempt to change them or “cure” them.
I celebrate the lessons that we all, in our condition as human beings, learn from unexpected circumstances such as disability. Disability is not the enemy here. Disability is just a word, a circumstance, a human manifestation of existence. We have the final word to decide what we do with this circumstance, what do we fight for and what do we want to achieve. Me, as a mother and advocate, I want disability to be seen as a spectrum of human existence, to be normalized to the point in which we accept its existence to stop saying non-sense things like “disability is in our minds.”
I have worked with people with disabilities and their families since my first child was born, that’s 17 straight years. From all the families I have been honored to help throughout this path, I have learned that disability does exist and that my reality is not the only one. That there are other families out there fighting for access to things that are indispensable for them that I may not need for my kids because, in the wide spectrum of disabilities, needs are individual and different.
I have learned that families’ priorities are different and it’s our right as parents to focus on what we consider important. Going around while pushing ableist messages that want to convince families that to demonstrate ability all children need to fit the mold or demonstrate that disability doesn’t exist, is not my goal. There are people of all sizes, abilities, colors, and preferences in the world. We all have the exact intrinsic right to exist and be treated with respect and dignity.
And dignity means the right to exist and as a member of the community, have the ability to exist without barriers. To determine those barriers and to work on creating accessibility with a universal design in mind that creates real inclusion, we must accept the existence of a disability. We need to see and accept our differences to create an inclusive world. I always say it and I am going to repeat it, erasing disability is not the answer. Accepting it is the beginning.
