Recently I had the wonderful experience of hearing a parent
truly recognising and valuing her daughter’s qualities and talents, and
supporting her daughter to use those qualities and talents. It was at the Bat Mitzvah party of the young
woman in question – let’s call her Shona.
In her speech, Shona’s mum Rachel didn’t gush about Shona’s general
wonderfulness; neither did she offer Shona helpful advice. She did pick out specific qualities and talents
which Shona has and gave examples of Shona using them. Shona’s courage and strong sense of self,
standing up to playground bullies who picked on her because she has two
mums. Shona’s sense of fun and adventure
as a skateboard enthusiast. How Shona is
caring and generous to her younger sister and to her friends. Rachel gave some other examples as well – but
the key point is that her words were enabling Shona to recognise and value her
inner resources and to use them in years to come.
Tom turned thirteen in December and a friend who is Jewish
told me which section of the Torah is read the week of his birthday. It turns out it’s the story of Jacob’s ladder: while on a journey, Jacob lies down to sleep,
using a stone for a pillow. He dreams of
a ladder between heaven and earth, with angels ascending and descending, and he
dreams that God then speaks to him.
Jacob is clearly not a rich or apparently significant person
– he uses a stone for a pillow – yet the passage is all about his significance
and the significance of all people. In
Jacob’s dream, he and we are not just down in the dust of the earth, we are
connected to heaven and we are blessed.
What does all this mean for me as the parent of a young
person living with Duchenne muscular dystrophy?
Like many other young people living with DMD, Tom is
painfully aware of what he can’t do that other people can do. A few years ago we saw his self-esteem taking
a downward turn as he became more aware of his condition. On the advice of a psychologist, we asked his
grandparents and some other people close to him to write down what they knew
about him – to put the good things.
Reading and thinking about those things really helped Tom to recognise,
value, and to use his qualities and talents.
It has hugely strengthened his sense of self-worth.
As a parent I can support that by noticing, just in the
day-to-day course of things, what Tom is good at and does well, and telling him.
Ryan Worth is a young man who has clearly grown up valuing
his abilities. He now wants to study
history and politics at university and to contribute his education and talents to
society as an MP. Ryan is also living
with Duchenne muscular dystrophy and needs 24/7 care. Because of cuts to social care in his local
authority, Ryan has to share a care package with his brother. https://www.theguardian.com/society/2017/jan/08/the-crisis-of-disabled-millennials-it-feels-hopeless. Simply for this reason, Ryan is
currently not able to take up his place at university.
Our government has identified four ‘British values’: democracy, the rule of law, individual
liberty, and mutual respect and toleration for those of different faiths and
beliefs and those of no faith.
Does ‘individual liberty’ not apply to all, including those
living with disabilities who need social care? Does ‘mutual respect’ only
apply to faith, or does it apply to all difference, including physical
difference?
Current cuts to social care are so severe that they cross a
line: the line that divides seeing
individuals as significant, with qualities and talents to contribute, from
seeing them as care units to manage as economically as possible. To cross this line is to move into very
dangerous territory.
We need to actively resist the idea that the current cuts in care for people living with disabilities are acceptable or inevitable. Not just as parents and family members, but as voters, citizens, and media and social media users we need to recognise the
significance of every person’s qualities and talents and their right to develop
and use those talents.
No comments:
Post a Comment