No One Wants to be a TB ‘Suspect’: Learning from the Disability Rights Movement

Today marks the United Nation’s International Day of Persons with Disabilities. Its theme is ‘overcoming barriers’; and the importance of removing barriers, whether physical or societal, is one with which people affected by tuberculosis (TB) can identify.

Globally, about 15% of people have some type of disability, including some caused by TB. Currently available TB drugs can lead to hearing loss or deafness, kidney failure, and hepatitis.  Some drugs can also have negative effects on mental health, including depression and paranoia.

“People First” language has been around for about 20 years; it puts the person at the forefront of the conversation, not their disability. For instance, instead of saying a person is disabled, many people prefer “person with a disability.”

For too long, people with disabilities have been defined by their disabilities. The phrase “nothing about us, without us” was popularized by disability activists who were tired of other people planning every aspect their lives ‘for their own good.’

Demanding inclusion—real inclusion--is a sentiment echoed by the TB community. So it’s not a coincidence that at the Union Lung Health Conference earlier this month, TB advocates carried signs demanding that they be meaningfully included—sought out, even—in decision-making about health and TB-related priorities.

Carrying signs with messages such as ‘Nothing FOR us, WITHOUT us’, protesters asked speakers to avoid language like defaulter, and control, in favor of language that puts the person at the center of the conversation, rather than the center of contempt.

No one wants to be called a TB ‘suspect.’

The Stop TB Partnership recommends use of terms like person lost to follow up instead of defaulter, and TB prevention, care and treatment in place of control.  The point is to use language that humanizes, instead of blames.

As Deepak Chopra writes, "Language creates reality. Words have power." 

 If we in the TB community do a better job of modeling inclusive language like the disability community has been doing for years, others will follow our lead.