What We Lose When We Label Mental Disability

In almost every country where the Mental Health Initiative works, public officials often ask me for the latest developments in diagnosing people with mental disabilities. To be honest, I don’t know why assigning labels to people is such a universal concern. Why is a disability label so important—is it that once there is a label, people can put a name to certain behaviors? Is it easier to understand human diversity by calling it by a name? From my experience, labeling people is never a good idea. It serves to undermine their individuality, and it pigeonholes them into a certain group, which is often defined more by prevailing stereotypes than anything else that is true about the individual person.

Alphia Abdikeeva, a longtime colleague currently working at Centro de Investigaciones en Derechos Humanos in Spain, puts it best in a recent blog post, "Intelligence is a subjective matter":

I have met some minority children with Down syndrome and other specificities that professionals would define as intellectual disabilities. Being from families where two (or more) languages were routinely spoken at home, these children grew up bilingual. A bilingual person with an intellectual disability defies any definition. How many so-called “normal” people in the US, UK, Spain, or other country with a widely spoken language ever master a second language? So, who is disabled then?

The other day I had an urgent post delivery. It was brought by a man whom professionals would also define as having an intellectual disability. However, he has a paid job (a postal courier), he drove a vehicle (which means he had passed a test to get a driving license, which is more than I managed, with my academic degrees). In short, he is a full member of society, which chose to include him, support him, and which benefits from his social inclusion (in the form of taxes, work product, and non-expenditure on institutional and other costs), as much as he does.

This is the reality we are striving for in Central and Eastern Europe. Where we can, we partner with national governments to create sustainable, community living programs. It’s not only the right thing to do, it’s the only thing to do. But there is still so much work that needs to be done to create the same opportunities for people with intellectual disabilities in Serbia, for example, as in Spain. Alphia commented on the differences:

What a contrast to countries in Eastern Europe where abandoned children are instituionalised and often are neglected to the point that they do not master elementary skills, which puts their development on the level with those who were born with inherent developmental disabilities. Then the states pay for this neglect with life-long disability pensions. And it hurts to think that just a portion of the money some states spend on keeping people with disabilities locked up, where they are invisible, unwanted and abused, could be enough to support them to become rightful, contributing members of society.

And we know just how much people can contribute! I’ve witnessed up close how leaving an institution can completely change a person’s life. My friend and colleague Zdenka Petrović was sent to an institution as a child and spent 27 years hidden away behind cement walls in Croatia. Through an OSI project, she was able to leave the institution and move into the community. She went to school to get the education that was denied to her in the institution. She was the first president of the first self advocacy NGO in the region for people with intellectual disabilities.

We are working to make Zdenka’s story the norm, not the exception.