July is Disability Pride Month.
A friend of mine posted something about it the other day. She was celebrating…………….well that is just it. I don’t know what she was celebrating! I continued to mull it over, and it continued to bug the daylights out of me.
What are we celebrating? Diseases? That the government has recognized discrimination against this large population and federally protects us now? That our group finally is being objectified in mainstream media? That we are taking a stand and apparently refusing to inspire other people anymore?
I did some research and discovered this whole “Pride Month” is essentially a fight against ableism and inspiration porn. Let us define these.
Ableism: (1) a condition throughout society often characterized by condescending, rude, or abusive attitudes towards those with disabilities; (2) discrimination in favor of able- bodied persons; (3) a set of ideals that devalue and discriminate against people with intellectual, physical, or psychiatric disabilities and often rests on the assumption that disabled people need to be “fixed”
Inspiration porn: (4) to objectify one group of people in order to inspire, motivate and make nondisabled people think that a disabled person’s life is worse; (5) often portrays disabled people doing ordinary things
Okaaayy. With as little angst as I can…
First of all, yes. Ableism is present in our society, and I will tell you why. Most people do not deal with disabilities of any sort. It barely touches their lives, so of course they don’t think of it! That is not a societal issue. That is a blessing for those people. Unless they know and do life with a "disabled" someone, it is unlikely that they think of the privileges they have as a nondisabled person.
Second, a lot of us with disabilities do need to be “fixed.” Without medical intervention, we die. The medical community at large doesn’t use that word to mean “there is something wrong with you and we have to change it.” No! They took an oath and dedicated years of their life in order to help us live the healthiest we can despite the physical breakdown many of us experience. Stop putting words in their mouths and be grateful that someone cares to learn about your condition and help you live your best with it!
Third, we should inspire the rest of the population! We do everything a “normal” person does (and more) every single day. Our stories should cause others to reevaluate how they look at their own life and how they handle less than desirable circumstances. We were given different stories than most of the population to inspire! Why are we not embracing that?!
Fourth and finally, I take issue with the label of “Pride” on this. Why are we taking deep satisfaction and pleasure in our conditions? Why are we joining an even larger movement to shove idealistic and unrealistic expectations down the throats of the majority with no kindness, no love, and no education? That accomplishes nothing, teaches no one, and brings about zero change.
I object. STRONGLY. To all of this.
I object to celebrating the disability. I object to glorifying the disease. I object to reveling in a piece of our broken world. I object to lifting up something that was never supposed to be. I object to a piece of my life being placed on display, considered something that holds me back and then told to celebrate it. I object to whatever I accomplish being looked at and qualified, as if graduating college with a disability is more impressive than someone without.
I was not raised to celebrate the bad. I was not taught to view myself any differently than the gal next to me or the dude across the road.
I was encouraged to do life and to do it well. I was taught to advocate for myself. To educate when the opportunity presented itself. I was taught to embrace my story. To walk it well. To put it in a box, shove it in a closet and only take it out when I needed to deal with the disease, the condition. My parents refused to alter my family’s life, my life, because of a so-called disability.
Today, I still choose to do life like that, refusing to alter my life for a disability. I refuse to give my disability credit for what I have done in and with my life. I am proud of what I have done…not what I have.
I love my life- disabilities and all. I love that I get asked about the stickers and “the…the thing on your leg” and the iPod on my waist and the scars on my belly and the “rash” on my feet and why I was in the ER last week. I love seeing the people around me care about something they know nothing about and have never heard of…because they cherish me. I love seeing them get excited about learning something new. I love hearing people check themselves when they go to complain about a cold.
I love doing life with people only for them to find out about my disabilities weeks or months into those relationships and seeing nothing change. I love that people see me first and my disability second – as something that adds to me, but is not me.
That doesn’t just happen, people. Those are tangible changes in the lives of the people around me and how they see disabilities, and it didn’t happen by Pride parades, snarky Instagram posts, or Facebook rants. It happened by and through relationships.
Instead of talking about what we do not get because of our disabilities, let’s talk about what we gain! Responsibility and maturity, loads of respect from those we do life with, a sweet perspective on that life, strength, compassion and empathy, better self-care skills and the knowledge of when to say “no.” Instead of hiding our stories and screaming to be treated as everyone else, we have a unique opportunity to stand up, walk forward and educate people.
We get to show the world that diseases cannot stop us, conditions cannot stall us, wheelchairs cannot confine us, and funky brains are still brilliant. No one else can do that. No one.
It is time to stop celebrating and taking pride in a prefix that means (6) “having a negative or reversing force.” Let us celebrate our ABILITY. Please! The ability to see the world as we do, the ability to inspire, the ability to conquer all, the ability to change opinions and views. Let us live in the ability – to eat, to drink, to be merry, to fall in love, to change careers, to make mistakes, to grow and change and age and ultimately, to leave a legacy.
I don’t know about you, but I want a legacy free of a disability status, where people do not even remember that I had a disease because it does not matter. I don’t know about you, but me…. I want a legacy where my presence is missed because my smile encouraged and loved those around me and my hugs were a delightful treasure.
2 Google definition