Sunday, February 16, 2014

Not Synonyms

It’s almost rare disease day.  Does that mean anything to you?

It doesn’t actually mean much to me.  I do not connect to the observance of this day.  I understand the point is to raise awareness of uncommon conditions.  And would venture that there is most likely a fundraising component to it and a detailed mission of some kind, though what I see shared on social media is centered only on awareness of rare diseases.   

My daughter has a condition called Rubinstein-Taybi Syndrome, and while it is rare, for her it does not manifest as a disease.  For us, her family, teachers, friends, neighbors -we do not treat it like one, we could not. One would never look at her and see illness.  And while I can see that wider understanding in the medical world should help with diagnostics and possibly treatment, unless you are a medical professional involved in her care, your awareness of RTS doesn’t really do much for Addie.    I’m just not sure how the average joe knowing the symptoms of RTS makes a place for my girl in the world, how it informs a friend, teacher, neighbor, roommate, coworker , boss…about who she is and what she has to offer.  There are a lot of words I’d like to come to your mind when you encounter my daughter – smart, limitless, witty, resilient, confident, generous, hilarious… disease isn’t 10th on the list or 300th or even on the list at all.  
Disease and disability are not synonyms.  They do not refer to the same things. One can have both, one can have either or one can have neither.   Rubinstein-Taybi syndrome is a disability, not a rare disease.  An RTS awareness campaign is of questionable value for my daughter.

Parents have asked what resources to give their young child’s teachers to inform them about RTS.  This is a natural question, but one I can only respond to with more questions to consider.  Why is it important for a teacher to know the possible manifestations of one part of who the child is before knowing the child himself?  Does an understanding of what could be involved in RTS help or hinder a teacher getting to know that student for who he is as an individual learner? Will knowing what RTS may look like in a range of children help his teacher teach better, will it help raise expectations and assist in envisioning his future as a contributing citizen of many communities throughout his lifetime?  Will it guide the teacher and administrators in setting a tone of academic expectations, dignity, friendship, and daily leaps of faith within the school culture?  Or might it unintentionally limit or even thwart some of these things altogether if it comes before that teacher internally chooses faith in his potential and in his place in her classroom?

We work very hard on ensuring people see our daughter clearly for who she is as an individual without limits.  She is indeed rare – her always-amused demeanor is uncommon, her way of showing her joy and appreciation is incredibly original, the 24/7 interest in science and experimentation is not something that seems typical of all 10 year olds, the way she declines to show incremental steps of progress towards a goal, but rather waits to unveil the entire new talent or skill when it’s complete is something you don’t see every day, her extreme love of dogs but complete lack of desire to actually pet them throws people for a loop almost daily, her memory  and attention to the details that matter to her are unparalleled, she has a one of a kind adoration of water in any form, any vessel, the fact that she has complex feelings and thoughts, but feels no outside pressure to elaborate on these is singular.  Yes, she’s rare.  And these are the things her family and teachers and friends need to know.   We spend nearly every waking moment ensuring others do not filter their view of her through a lens of patronizing pity or general “otherness.”

To see this flurry of activity on social media asking for the general public to consider RTS a disease contradicts some of this work.  It can turn dignity to pity, belonging to merely tolerance. So while I understand our circumstances are not an exact match to others’ and that people don’t make the same choices as we do, we do not remain silent when those choices may negatively impact our own rare children.

Pssst. There is no sickness in my home.
No illness. No disease. Disability, yes.

Disease, no.
(This t-shirt and many other awesome empowering designs is from The Nth Degree )


Anonymous said...

Thank you Terri -
My understanding of what makes a disease a disease is that there is a cure or at lease a treatment.

Unknown said...

my name Ako Tofiq, senior student at American university of Iraq Suleiman. there is a child in Kurdistan, in the northern of Iraq. she has the same disease(cannot walk and speak, but she feel and understand very well. beside, she keeps being tall while she is so thin). Her parents want to heal her. If you can do anything to her please let me know.

you can find me on facebook or twitter: Ako Tofiq
or via this email address:


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