The interview and portrait by Chris Steele-Perkins for
"The hidden face of caring" in
The Guardian in the UK. This interview profiles the married couple Mikky and Peter McDonald. Peter has CP.
Chris: What is your condition, Peter, technically?
Peter: The main one is cerebral palsy. That's where a small area of the brain that controls the muscles is damaged at birth. So you get extra movements, and when you want to perform a particular task, you almost have to send the message twice. I can't ever relax, I have to monitor what my muscles are doing.
C: It seems to be only certain muscles…
P: In my case, yes. My speech is mostly unaffected, but my hand-eye coordination is affected quite severely, so things like driving are a no-no. Other people can't swallow or speak. The range is huge.
C: And Mikky, how did you both meet?
Mikky: At a conference in Leicester, in 1991. Pete was talking about child protection and disability, I was in social work education. We became friends.
C: Then later you got married?
M: Yes. Out of nowhere we just fell magically, miraculously in love. I am Pete's enabler, as well as his life partner, his wife. Which means where there are things he can't do, and I can, I do them. Some aspects of dressing, getting in and out of the car… For Pete to cook, I have to be his sous chef.
C: Peter, if you hadn't met, would you be living by yourself?
P: I'd probably have a supervised flat somewhere.
M: Or lots of carers coming in.
P: Yes.
M: Spontaneity is the first casualty of disability. You can't just say, "Let's go out and eat" – you have to plan ordinary activities, then execute them. Quite often, it's just too exhausting.
C: Does that get to you?
M: No, it doesn't, because I love doing stuff with Pete. He is the most brilliant, amazing, wonderful person I've ever met. Whether it's chopping vegetables or trying to get to Paris together, it's the best fun on earth. But what pisses you off big time is the bureaucracy, and people's selfishness, ignorance. Having a colleague say, "Well, Pete was disabled before you met, so it's not our problem."
P: That's a common attitude. Unless you've lived with a disabled person, it's very hard not to see them as different. People often say, "Why don't you see many disabled people about?" It's because, even now, there's still segregation and prejudice.
M: It's apartheid. American research with disabled children revealed they thought that, when they grew up, they'd either magically not be disabled or they'd die. That's how they made sense of not seeing disabled adults about.