Hello! I'm Amanda, a cis woman, who has a disability, is in a wheelchair, bisexual and subversive to the point of being recognized by her work.
I remember the first time I googled my name and found a music artist card… It's almost an act of resistance when I read articles about my work with music or with accessibility. That is, with the causes for which I believe and dedicate all my strength - and that's a lot for anyone who has AME (spinal muscular atrophy).
SMA is a genetic condition that directly affects muscle strength, something that is unconsciously undervalued by those who do not have this condition. The weight that some people lift at the gym is equivalent to basic issues of autonomy, such as: going up a curb, having your arms up, fixing your hair or even lifting a plate with food.
For many of us people with disabilities, life expectancy and, in a sense, our destiny is dictated by a doctor, along with a diagnosis - and guess what? Often in an almost non-humanized way.
I come from the 90s and my contact with the computer came with dial-up internet. It wasn't easy to find information about something that I was told was a non-degenerative disease, inherited from my father, that made me fragile, insecure, impotent and incapable - because that was exactly how they told me I should be.
So, I began to understand that I could go further if I believed more in myself than in others - and in their considerations about realities they don't know.
One fine day I discovered that I was people.
That I deserve respect, opportunity and the dignity to act when and how I want or need - as well as any figure we call a person. Also, I learned that this is in the law and I have the right to charge!
And I will charge, complain, re-claim! Claim, again and again, as many times as necessary, so that everyone has THE MINIMUM. Everyone, including you reading this sentence, right now. Everyone who is going to age and feel how difficult it is to inhabit a body outside the “standards”.
They standardized humans with a base that doesn't make sense for an immense amount of people who inhabit this planet. Hence excludes a lot of people!
You know that phrase “inclusion is inviting people to dance”? It's no use asking people to dance if the dance floor is upstairs, if the stage doesn't have a ramp, much less a platform, to raise a wheelchair user to the height of who will occupy that seat comfortably - without feeling like a reason for discomfort, a synonym of problem.
PcD, LGBTQIAPN+... When acronyms are mixed, they significantly increase the number of people who discover that diagnoses and some nomenclatures are technical notes, related to some factors of each one of us.
For example, anyone who says that "autism is a trend" has no idea that the reality is that the world is full of undiagnosed people.
There are many people living with a feeling of guilt or fear for being who they are! And that was also the case with our ancestors - can you imagine who we would be if our grandmothers knew what we know today?
Today I can research more about my condition, my roots and my options. And, it is really necessary to run out of options to understand what the minimum rule should be to have respect, education, work, culture, health, leisure and pleasure - and that phrase has many meanings.
In the online world, with the constant advancement of technologies, I manage to discover people similar to me, who connect in an aspect that only we understand and that you will only understand when you get there (because, at some point, you will!).
Here in the digital universe, I can write this text and share publicly that I came out of the closet a while ago and that those who matter to me do not question it - because they know that this is not the only thing that defines my values.
It is not a disability, gender identity, color, ethnicity, sexual orientation, financial condition, social status or mental health that separately defines who a person is.
Who defines is the person himself!
The problem is in the constant layers of barriers that we have to face, in order to be able to occupy spaces in which we fit. But we couldn't get in with our heads held high and without pretending to be someone “disappointed” or angry. There is still so much obvious that needs to be said. But I think it was already worth the reflection that I would like to bring.
It's time for society to start treating all people like PEOPLE. So we won't need to argue for an acronym, for a bathroom, for the right to be called by our name... Until then, it is necessary to continue fighting ableism, racism, LGBTphobia, fatphobia, ageism and all prejudices that reproduce violence, always seeking the best way of teaching, either by love or by law.
Amanda Lyra is an expert and consultant in Digital Accessibility and Accessible Marketing, musical artist, model and speaker. Founder of the Solyra Project and columnist for Peita. Follow her on FACEBOOK and INSTAGRAM .
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