In past times, people with severe disabilities have been feared, excluded from communities, their families ridiculed and ostracised. The echoes of this somewhat ruthless treatment are still with us today. Even in recent times, disability was hushed up, not spoken of in polite circles.
I love the way that small children react to Daisy and Lenny. Lacking inhibition, and with a newfound wonder of the world that has yet to be dampened by negative experience, they look, they ask, they want to reach out.
‘Is she just a baby?’ a little girl, barely more than a toddler herself, once asked of ten year old Daisy, who was, at the time happily dropping handfuls of pebbles into her own hair. From an older child, or with spiteful inflection, the ‘just a baby’ comment would have been hurtful or insulting. But watching Daisy engaged in her chosen activity with childlike delight, no concern for the dirt on her clothes or in her hair, no concern for anything except the pleasure of the sun-drenched moment, I could see what the little girl meant.
I smiled warmly and was about to explain that Daisy wasn’t a baby, but that she still enjoyed many of the things that babies do. But the girl’s Mother dragged her off roughly by the arm, mortified it seemed that she should have openly asked about Daisy’s condition. These are the echoes of generations of shame and secrecy that can only be eradicated by shining a light of truth and openness on the situation.
Many families I know (myself included from time to time) refuse help because of a fear of not being seen to cope . A desire to do everything independently and not to have to rely on the charitable actions of others. This resistance, again, is inherited from our less fortunate forefathers. People who could not contribute in the normal way were a burden, they would have to be sent away, or left alone, in order that families did not fall into poverty. Imagine the grief of a mother forced to do such a thing, and the shame that she would feel on top of that grief, and the need to cover up both the grief and the shame in order to plow on with her life.
Back to the here and now, attitudes and services sometimes fail us, and the echoes of past troubles haunt us. But things are looking up. When we speak with honesty, wanting not pity but fairness and understanding, we find that people are prepared to listen, and to act. When we strip away the outmoded echoes of shame, then we are free of those old and tiresome burdens, and we find ourselves lighter, and much more able to deal practically with the problems that present. We find ourselves free to enjoy the beautiful children that can teach us so much about what it means to be human.