Disability and Dignity: Changing How Communities See Children with Disabilities

There is a room we visit where children who cannot walk or speak are fed at a long table, wearing bibs with their names written on them. Names on bibs is a small thing. It is also the whole argument.

Somebody decided these children were individuals rather than a group to be managed. That decision costs nothing and changes how everyone in the room behaves.

What disability actually costs in a community

The physical difference is only part of it. A great deal of what limits children with disabilities is what happens around them.

Being hidden. Some families keep a disabled child out of sight, not from cruelty but from exhaustion at the staring, the questions and the comments. The child's world shrinks to one room.

Being blamed. Parents, mothers particularly, are still sometimes held responsible for a child's disability. It adds guilt to an already heavy load and makes families reluctant to seek help.

Being assumed incapable. A child who cannot speak is frequently assumed not to understand. People talk about them in front of them. Some understand every word.

Being excluded from ordinary things. School, church, a neighbour's celebration. Often nobody intends exclusion; the ramp does not exist, or nobody thought to invite.

Small things that change the temperature

Use the child's name. Not "the disabled one". Names are how a person stops being a category.

Speak to them, not about them. Even if you are unsure how much is understood. The cost of being wrong in that direction is nothing. The cost of being wrong the other way is considerable.

Invite the family anyway. They may not come. Being remembered matters even when attending is impossible.

Do not stare, and do not conspicuously not look. A normal glance and a normal greeting is what most families want.

Ask the parent what helps. They have thought about this far more than you have. Offering a solution before asking implies otherwise.

Say nothing about causes. Theories about why a child is disabled, whether medical, spiritual or dietary, are almost never helpful and frequently wound.

Language, briefly

The usual guidance is to put the person first: a child with a disability, rather than a disabled child, and certainly not language that reduces someone to a diagnosis. Some people prefer other formulations, and the safest approach is to use what a family uses about themselves.

Language is not the whole issue and it is not nothing. How we talk shapes what we assume, and what we assume determines whether a child is invited.

Why this is advocacy

Advocacy is one of the three activities we are registered for, and this is a large part of what it means in practice.

We can deliver supplies to a family every month, and that is real and necessary. But if the community around them still treats their child as something shameful, we have relieved a symptom. A community that treats disability as ordinary produces families who stop hiding, children who get invited, and schools that find a way.

That change is slow, unphotogenic and impossible to put a number on. It also outlasts everything else we do.

What we ask of visitors

When people come with us to a centre, we ask three things.

Follow the lead of the staff, who know each child. Take no photographs of any child without a guardian's written consent obtained beforehand. And if you find it difficult, which people sometimes do, that is fine, but manage it quietly rather than in front of the children.

Most visitors arrive slightly nervous and leave having had an ordinary afternoon, which is exactly the point.

If this is your family

If you are raising a child with a disability in Ruiru or the surrounding communities and you are managing it alone, get in touch. Practical help sometimes. A direction to the right office often. Someone who treats your child as a person, always.