To most people Faith Njahira Wangari, a 2015 Mandela Washington Fellow from Kenya, doesn’t appear to have a disability. She does not normally use a cane, wheelchair or any other support device to get around. But Njahira lives with muscular dystrophy, which causes progressive weakness and the loss of muscle mass.
“‘You don’t look like someone who has a disability,’” she often hears from people when she tries to use reserved parking spots or asks where the nearest elevator is. “Is there a way that they are supposed to appear? What makes you think I am not one of them?” she answers.
Because many do not recognize her needs, she has learned to become a stronger advocate for others living with a disability and its effects.
“My 4-year-old niece has more energy and strength than I do,” Njahira said. It helps explain why normal morning routines — like getting from a sleeping position to one where she can stand and get out of bed, then shower, dress and eat — all take tremendous effort and planning. And this is in the comfort of her own home, where she has control of her environment. It becomes even more challenging once she starts the rest of her day in the outside world.
“I need to distribute energy in a way that will ensure that I have enough to get through the day without being fatigued or falling. That’s the first thing that goes through my mind,” she said.
In her blog, Njahira shared “The Spoon Theory,” which she calls “the best explanation so far” to help others understand what it is like for her. It was written by Christine Miserandino, who suffers from lupus. She compared the limited energy she has in a given day to having a set number of spoons she can give out, factoring in variables like the weather, distances to travel, chores and social obligations in addition to daily tasks.
“When other people can simply do things, I have to attack it and make a plan like I am strategizing a war,” Miserandino wrote. For Njahira, the spoon theory helps her explain to a friend why a decision to buy food may mean she can’t meet them socially later that day. Or why she must cancel her participation in a meeting because it is being held at a venue that requires her to walk up a flight of stairs.
“People will say, ‘Oh, we’re so sorry,’ but sorry doesn’t cut it,” she has had to explain. “You invited me, and I confirmed. You knew I couldn’t use the stairs to come up to your meeting.” She has even concluded, “Maybe you don’t want me in your meeting.”
Accessibility in public places has advanced in the United States largely because of the legal requirements set by the government through the Americans with Disabilities Act. Njahira said in Kenya the private sector has been much better at making shops, schools and other places safer and easier to access. By contrast, getting many essential public services can be very difficult for someone with a disability. For example, Njahira’s local passport office has a flight of stairs that everyone must navigate. There is no alternative.
“I feel really angry while watching people with disabilities — either someone who is totally blind nearly missing a step because they can’t come down every step or watching someone in a wheelchair having to be carried up those stairs either by the guards or the policemen on the premises, or watching someone using a cane or crutches stumble and actually take risks going up and down the stairs,” she said. “I don’t think [the management] cares because if they did they would have actually done something about this.”
Along with helping people with disabilities create a more accessible world, the rest of us could also help reduce their marginalization just by interacting with them. Njahira said a local albinism awareness organization has the slogan “Don’t Stare. Ask!”
“That’s what I would tell anyone,” she said. “I don’t think people realize that their face communicates as much as their words,” or imagine what it feels like for someone with an obvious disability when a room falls silent as they enter.
Asking questions is much preferable to making assumptions. For example, if someone with a disability shows up at a hospital, don’t just direct them to physical therapy or some other department. “Maybe they’re there to see a friend. Why assume just because they have a disability they are sick?” she said. For Njahira, having someone ask her why she doesn’t walk like other people gives her an opportunity to make them more aware of muscular dystrophy. But that’s not all.
“Some people have the idea that the only thing a person with a disability can talk about is their disability,” she said. “It only takes a few minutes for people to realize I can engage with them about much more.”