I wrote a post earlier this week addressing my heartbreak over the systemic racism in America with a call to action to support black lives. Then I listened and realized that, this week, at this time, it was not my voice you needed to hear. I will share that post another time, but today I am honored to introduce you to Sherri Brady. Sherri is graciously sharing her experience as a black special needs mother. I met Sherri and her daughter Lauren at Epilepsy Awareness Day at Disneyland in 2018. When I say that these two women lit up the room - I mean it. Their energy is infectious and their love contagious. I encourage you to read her account and share it. When we, as a special needs community, tout inclusivity let’s make sure that includes black families as well.

My name is Sherri, my daughter Lauren is 23 and has Rett syndrome. From the moment that Lauren was diagnosed I have actively and tirelessly done what I can to ensure she receives the care she needs and the services that will help her thrive. It’s also important to me that Lauren is happy, has experiences that she enjoys and lives life to the fullest. I want Lauren and others like her to be valued, respected, treated equally and included and welcomed in all aspects of life. I would think most if not all special needs parents feel the same.  So, it seemed to me that they would understand that black people want those same things too and that the anger and frustration that’s being seen is the result of that not happening.  Thankfully many do or are trying to and some are even using their voices and actively joining the cause, to them I say, I see you, I hear you and I appreciate the outpouring of support. However, there are others that don’t or seem unaware of the history behind these feelings, to them I would ask a few questions…

• How would you feel if someone said your child’s disability wasn’t that bad and you should just get over it or if anyone thought they weren’t worthy or less than human?

• What if you shared info to raise awareness about your child’s disability and someone responded “what about all the other disabilities” or they told you not to talk about challenges your child deals with? 

• What would you do if your child wasn’t welcome somewhere, was prevented from doing something or was harmed in some way or worse, lost their life because of someone else’s actions and law enforcement did nothing?

I’m certain in any of these scenarios most parents would be angry and frustrated and would use every law and recourse available to fight for justice for their child. Now imagine dealing with these types of things and worse…because of your race. Sadly, with issues involving race the end result is not always justice. As the parent of a child with a disability that happens to also be black, the challenges we face are multiplied. I’ve seen and must be constantly mindful of the statistics showing the health disparities due to race to ensure that Lauren gets the care she needs because not receiving a treatment or necessary medication could very well be life or death for her. Lauren actually participated in a research study looking at that very topic. The study was conducted by Mary Lawlor and Cheryl Mattingly out of USC and you can read more about their research here. On more than one occasion and in different settings, comments have been made about Lauren’s care or how she looks that were intended as compliments but implied that the expectation was something less for black children. Lack of representation can lead to a feeling of loneliness even in the room full of other amazing people but none that are like you. I think most special needs parents would agree that it’s impossible for others to truly know what our lives are like without walking a day in our shoes. The same is true when it comes to race and it’s tiring, frustrating and disheartening to see others dismiss that or argue otherwise. 

Whether I find myself in a discussion about race or disability the common denominator is a realization that understanding, compassion and most importantly empathy are key. Put yourself in someone else’s shoes and do what you can to see things from their perspective. Where we live, how we were raised, our level of education, our economic standing, our abilities and yes, our race, all play a part in what life experiences we have. I’ve heard people say they don’t see race or they don’t see someone’s disability and in most cases they mean well but the answer is not to ignore any part of who a person is, the better option is to see all of them, all of their differences then accept, appreciate and respect them.