Dan had a degenerative brain disorder which left him with multiple disabilities. He passed none of the developmental milestones so could do no more when he died, 10 days after his fifth birthday, than he could the day he was born.
He didn’t appear to see or hear, he couldn’t support his head or move himself. He couldn’t even smile.
We used to say he couldn’t do anything but in spite of that he taught us a lot.
Because of Dan we lost the fear and ignorance we might have had about disability and through him we learned to accept people as people regardless of what they can or can’t do.
Had he been born a generation earlier, Dan would almost certainly have been put into an institution rather than living at home as he did. That wasn’t always easy for us because he required 24-hour care and while the policy had changed, the system wasn’t up to speed with the support needed to meet the challenges of life in the community for people with multiple handicaps and their carers.
But we had wonderful support from family and friends, his doctors and organisations like Plunket and IHC and we weren’t aware of any discrimination against Dan, or us when we were with him.
Not everyone’s experience is so positive. That is almost always because of ignorance and we have Dan to thank because we’re not guilty of that.