It’s been twelve years since my first child was born and diagnosed with Down syndrome, and nine since my daughter was born with the same condition. All these years later, I still have to deal with condolences and what are meant to be empowering words from strangers who stop me to remind me how blessed I am and how smart they can be. I understand and respect people’s desire to be nice and empathetic, but believe me, those attitudes are the result of deep prejudice and they are not healthy or empowering at all.
These are my children and to me, they are the most beautiful, perfect and amazing human beings in the universe. Disability is just a circumstance that we have learned to deal with. It doesn’t define us as a family. We are not a “special needs family”, whatever that might be. We are instead a family with unique needs just like any other. We’ve never used “disability” to justify, excuse or obtain anything. We look at each other with pride, with hope, and with deep love.
Because of that, I don’t need friends or strangers to give me a lecture on my condition as a human being. I don’t want to gain attention based on the belief that in order to love and accept your own child, who happens to have a disability, you need to be a saint or a superhero. My children are mine and were born out of me. I love them for who they are, but I love them too because they are a part of me and their lives represent the most humble and human moments of my own life: The days when I decided to become a mom.
If as a concerned citizen, your intention is to include others, the best way to include is to avoid pointing out all of our differences. If your intention is to promote diversity, then you have to look at the person first, because diversity is all about recognizing the individual in order to discover the unique gifts he or she has to offer to our communities.
Disability is tough, but our lives are not a hardship. We face challenges like everyone else, but like everyone else, we work hard to overcome them. Like others who are determined to succeed, we do our best day by day. We have good and bad days, and as I’m not an inspiring person 24/7, my children are not always happy and they are certainly not angels. We project the best of us into this world, not meaning that we don’t constantly need to deal with our own flaws. We are human.
What’s my intention with these words?
By humanizing ourselves we create awareness and we celebrate real inclusion and diversity in our communities. Truthfully, it’s impossible to keep up with the surreal standards that people want to assign to those who live with a disability and their families.
My children and I hope others agree that like every other person with special needs,
- Have the right to be themselves,
- Have the right to be perceived as unique individuals.
- They have the right to move freely in their own communities without unsolicited attention and without the perception that others anticipate them to have supernatural powers.
- They have the right to be included, accepted and celebrated just by being who they are, typical human beings with personal strengths and weaknesses, just like everyone else.
So please, stop telling me how blessed I am or how lucky my children are to have me. We are lucky to have each other and we don’t believe in pity as a factor to promote inclusion. Instead, we believe in allies who stand up and are willing to overcome their own prejudice to support us. We believe and fight for the only thing that we really need: to be treated equally, no different from anyone else.
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