What is Disability Bias (Ableism)

Disability bias (or Ablesim) is the belief that being able-bodied and able-minded is the best way to be in the world.

It's a lot like the concept of eurocentrism. That the Europeans viewed the Aboriginal culture and their way of being in the world by the standards of their own cultural experience and found it lacking, barbaric, and culturally inferior etc.

Ableism is seen in many of our attitudes, specifically in the value we place on others and the type of people who are considered "burdens" to their family and to society at large.

There is a pervasive belief that people like Phoenix are less worthy of the rights and responsibilities which are bestowed upon people who do not have disabilities.

 

It was not that long ago that when a child with DS was born that their parents were counseled to give up their child and place them in an institution. Parents were also counselled to withhold life saving treatment to their babies with DS.

 

Please consider the following case:

 

"In 1982, a baby boy was born in Indiana with Down Syndrome and a

tracheoesophageal fistula. The upper part of the newborn‟s esophagus was not

connected to the lower part. Surgery was both possible and likely to succeed. Without it,

the baby would die.

The mother‟s obstetrician had a particularly narrow view of Down Syndrome. He told the

parents that their baby would not have any quality of life, even if the surgery were

successful. Based on this advice, the baby‟s parents “agreed not to authorize surgery,

food, or water for the child.” Nurses at the hospital initiated legal proceedings to override

the parents‟ decision. However, the Indiana Supreme Court ruled that the parents had

the right to follow the obstetrician‟s recommendation. “Baby Doe” died when he was six

days old, before the United States Supreme Court could hear an appeal."

 

Based on the bias that this doctor demonstrated, this family felt that their baby was better off dead. Sad, sad, sad.

 

Doctors are also betraying their personal bias when delivering a DS diagnosis. "In a 2013 poll published in an article by Brianna Nelson-Goff and colleagues in the Journal of Intellectual and Developmental Disabilities called "Receiving the initial Down syndrome diagnosis: a comparison of prenatal and postnatal parent group experiences,"[iv] 1 in 4 women report that their medical provider was "insistent" they terminate their pregnancy, and their negative experiences with a medical provider outweighed positive ones 2.5 to 1."

 

I have personally read accounts from mothers who have received their DS diagnosis and offered a termination within the same breath. "I'm sorry to tell you that your baby has DS. When would you like to schedule the termination?"

 

I believe that the only logical conclusion for these type of biases is how disability and Down syndrome is treated and thought of in our society.

If it wasn't viewed as such a burden, if people with disabilities weren't pitied and looked down upon, I don't believe these sentiments would exist.

If there was one thing I would ask of each person who reads this, it's to examine their own beliefs around disability.

One of the reasons I write so passionately about Phoenix and other kids like her, is to promote the concept that she is a fully functioning member of society (as much as a 5 year old can be anyway). She is very much like other kids her age. She has thoughts and emotions. Her feelings get hurt. She is intuitive to the attitudes and emotions of people around her. She is obsessed with Frozen and likes to dress up like a princess. She's a normal kid: who learns more slowly, who speaks in shorter sentences, who has difficulty articulating and can't run or jump. She is so many things beyond her extra chromosome, yet often the first impression that someone has of her is Down syndrome, and whatever biases and beliefs that person has about Down syndrome.

These biases limit her. They limit all of us. Judgement is the killer of compassion and understanding. So please, understand that Phoenix will get there. She is capable. She is competent. Just like you or me.