I know, I’m not the only parent to worry about how good a job I’ve done. But, being a father with a profound disability gives me some additional pause for thought. As Caitlin, my only child, prepares to celebrate her 21st birthday, it’s an obvious moment to take stock and recall some of the challenges of being a blind parent.
Since Caitlin left home for university, she’s begun to gain some perspective on her parents and upbringing. During a recent trip home, Caitlin and I had a few very frank discussions about what it’s been like having a blind Dad and how my obvious limitations have affected her. Caitlin admits, she finds it difficult knowing how to introduce my disability to new people she meets. She dreads the awkward silences and same old questions that can follow – and it pains her when these responses come from people she has reason to admire and respect.
“It doesn’t matter how many times they’ve heard the one about the blind man who climbed Everest,” she complains, “they still ask the most basic questions about how you get dressed and get around. I can’t explain, it makes you sound sort of …”
“Helpless?” I offer.
“Yeah, I suppose that’s it. And then, I think they must see me as unusual or different.”
Caitlin’s never enjoyed being different or standing out. And, knowing this, I’ve always tried to shield her from the stereotypes and prejudice I regularly encounter. As Community Care, the journal for social care professionals notes: “children whose parents have additional support needs can acquire labels which are stigmatising and isolating”.
That’s why we always tried to get Caitlin into schools with a positive record on the inclusion of disabled children. If any difficulties arose, we reckoned we’d be pushing at an open door. Once, when Caitlin was nine, I presented a session to her class about Braille. It was well received, and each child left the room with a Braille alphabet card, a secret message to de-code later and, so I hoped, the impression that Caitlin’s Dad, whilst different, was also an interesting and articulate man.
At secondary school things were more difficult. Caitlin acquired the acute self-consciousness of a teenager and any parental presence at school was viewed as a potential source of embarrassment. We received detailed instructions from her on what to wear and what to say in order to mitigate any loss of face: and one of Caitlin’s stipulations was that I should never bring my white cane.
Caitlin recalls, when she was 17, inviting her first serious boyfriend back to the house. “I hadn’t mentioned to Tom you were blind and, because you and Mum had gone out to the theatre, I didn’t think you’d meet. But you guys came back early and I remember us all standing round the island in the kitchen, feeling extremely awkward. Then Tom reached out to shake your hand and I had to look away because I couldn’t bear seeing what would happen next!”
“Yes,” I offer, “but all credit to Tom for how he handled it. And, later, the two of us got on really well.”
One of the standard questions Caitlin gets asked is, “who cares for who?”. It’s a fair point.
Having one or both parents with a disability can shift the boundaries of responsibility and dependence, and there’s evidence to suggest it may have a detrimental impact on children. Research commissioned by the Joseph Rowntree Foundation, examined the experiences of 60 young carers aged 16-25. It concludes that: “Many children and young people who spend time caring for a chronically sick or disabled parent experience long-term problems in their own lives resulting from missed school and lack of qualifications or job opportunities”. The same study identifies an increased incidence of anxiety, depression and difficulties transitioning into adult life.
Caitlin never missed a day’s school on my account and she appears to be doing well at university. However, it’s true that, when it came to the practicalities of child-rearing, there was often less available energy. My disability meant there were tasks I couldn’t do and a whole lot more I could do, but only by slower and more circuitous routes. Significantly, more than half the young people interviewed for the JRF research were living in lone parent families. So, I’m lucky to have had a non-disabled partner to fill the gaps, a job to bring in the money and a support network of friends for when the going got tough.
And yet, I still worry that my disability’s had some more subtle, psychological affect on Caitlin. What about all those extra responsibilities she had to shoulder at an earlier age? I try to remember when it was I first took Caitlin’s arm and she began guiding me. We’re both surprised when I say, I think it may have been as early as six or seven.
Caitlin insists that guiding me has always felt like the most natural thing in the world.
“But surely,” I ask, “you must be permanently on the lookout for lamp-posts and hazards?”
“No more than when I’m walking by myself. It’s like you’re an extension of me and I have a sense of the space we’re taking up.”
I remember, with pleasure, when roles were reversed and Caitlin was an extension of my body. Once upon a time, before she got too heavy, I could simply strap Caitlin into the backpack and head off wherever I liked, using my cane. I was in charge: the way Dads are supposed to be.
Collecting Caitlin from her child-minder’s every evening was something I loved. I felt so proud, carrying her along while, over my shoulder, she chattered on about her day.
So, it saddened me to discover that one of the other mums had been discussing with the child-minder how dangerous it was for me to be crossing busy roads with Caitlin. I tried talking to the mother concerned, but she just couldn’t get it. And it rankled with me all the more because I knew she was an intelligent, talented and sometimes sensitive person.
Caitlin describes a traumatic incident when she was six.
One day, standing by the window, she saw me coming in from work, blood streaming down my face. My wife explained I was okay and that I’d had a collision with a carelessly constructed display outside a shop. But, when a police car pulled up, Caitlin’s anxieties peaked.
“I can’t even remember what I felt. Maybe, I felt angry with the shop-owner? But I clearly remember sitting there, feeling distraught, wondering, what I could do to help. And then it came to me: [Caitlin assumes the voice of a six-year-old] `I must write to the Queen`.”
My wife posted Caitlin’s letter and I assumed that was the last we’d hear of it. Except, to Caitlin’s six-year-old way of thinking: if you’ve taken the time to write to someone, then, obviously, you expect a reply. And, Caitlin’s confidence was rewarded.
“I remember the sense of proving you wrong, when I got a reply. I remember Mum screaming with excitement as we opened the envelope!”
So, aside from spawning a royalist, how have I done as a parent? Caitlin’s never suffered from any lack of love or attention, although thoughts about available energy influenced our decision not to have a second child. Maybe there’s a connection between the young woman who now sees herself as especially “observant” and “sensible” and some of the added responsibilities she had to assume at an early age. Although, as Caitlin points out: “I like being sensible – and who’s to say I wouldn’t have been sensible anyway”.
Mike Lambert, ALLFIE trustee
This blog is an extended version of this piece on the BBC website.
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