Why do We Keep Punishing People With Special Needs and Their Families?

I’m not a health policy expert or a lawyer. I’m just a mother. But I’m a mother who happens to have two children with Down syndrome and knows and understands firsthand the struggles of trying to access affordable healthcare. I have also lived this experience and can talk about how the lack of affordable healthcare services limits people’s lives instead of promoting self-sufficiency.

My kids have special needs, and yes, it was my choice to become a mother and give birth to them. Indeed, if it matters to anyone, I knew my son had Down syndrome from my fifth month of pregnancy, and still I chose to have him. I didn’t know with my daughter, but I would have never considered the option of ending her life due to her condition or for any other reason. I made my choice, and for that I consider myself pro-choice.

Though, and throughout the years, I can’t tell you how many times people have questioned my choice to give birth to my own children, why I chose to have them if I knew they were going to have Down syndrome? The most annoying part about this absurd situation is that many of these “well-meaning” individuals call themselves pro-life, but when it comes to children with special needs, they struggle with their vision and many times, as is happening right now, they agree that health insurance should not be affordable for all. These pro-life human beings consider people with pre-existing conditions unworthy and for them, investing money in their futures or overall wellbeing is a waste of resources.

To that I need to say: you judge me for choosing life? My children and I are penalized because I chose to bring them into this beautiful world? And now what? I should admire you, thank you for choosing to end their healthcare (thereby eventually ending their very lives) by limiting their access based on your prejudice? Because the tough reality here is that every one of those individuals who right now are pushing a prejudicial health care bill, are killing people with special needs little by little.

If you are not the parent of a child with disability, you may not understand, or have a f*%king clue of how stressful and exhausting it is to think day and night about your child’s needs and how to fulfill them. You might not know nor never have experienced how frustrating it is to have to choose between advancing your professional career and having to make peace with the fact that the only health insurance plan that accepts your children is the state-wide one, and for them to receive that, your whole family needs to live under an imposed salary cap that limits your income.

What about related services at school?

If you are not the parent of a child with physical, cognitive, or psychological needs, you may not know and understand that it’s through Medicaid that many children with special needs get to receive comprehensive individualized education plans to have an opportunity to succeed in school. For them, school is not only about getting A’s in academics. For many of them, it is equally (and sometimes more importantly) about maximizing their personal abilities so they can benefit from education to the maximum extent possible. Should we blame them for spending more money than expected, and go back to the times in which they didn’t have that opportunity, so we can all save on health insurance? Why do we keep blaming children and their families for having special needs? Even worse, how in the hell do we find ways to justify our arrogance and lack of empathy and respect for life?

As people with disabilities and as their families, we are victims of ableism: the system of oppression that perpetuates that people with disabilities are inferior to people without disabilities. Because still, people don’t understand that this is not about doing us a favor. This is all about contemplating the human right that we all have to exist in this world, and to access the same things in the most appropriate way. Without this balance, people can never live productive lives. We are dooming them to failure by choosing to deprive them of access to the tools they need to achieve their own well-being.

I hate to have to watch and read all this stupid news in which I’m pushed to believe that my children are not good or valuable enough to be treated with dignity and respect. I’m done with the tears and the pats on the back from those who feel bad for “people like us”, and then they support this legislation and try to make logic of it all by assigning a monetary value to each individual.

Reflect, people!! These double standards are the ones that push women to end their pregnancies. Making the right choice should come with the right attitude and that’s acceptance, inclusion, and equal access for all. Having children with disabilities should never have to be a battle (to the death) due to the lack of basic services, as is the case of affordable health insurance. Are you pro-life? Fight then for supporting life in all instances and at all ages and stages. Being pro-life is not only about fighting abortion; it’s about life-sustaining and celebrating every life with proper access and opportunities!

About the Author

Named as Best Latino Advocate 2015 Through the Use of Technology and Social Media, Eliana creates awareness about the possibilities of people with disabilities through her social media channels and bilingual posts. This past October, her son, Emir, was a guest of honor to the White House, along with other 10 geniuses in technology. For the first time a person with intellectual disabilities was included to represent his community. Her daughter Ayelen is growing up while representing diversity in her role as a model for several brands in the U.S.

Leave A Response