Looking back on old photos can be bittersweet. Especially when you have children with special needs. So many of us hope to carry on with family life as normal, and at first we think we can. And perhaps some families do.
But many differences become more noticeable as time goes on. More and more time has to be spent looking after their needs and attending appointments. Meantime other children grow older, and grow away from your child.
There are two moments in particular that stand out for me. One was a letter offering a secondary school place to Smiley at the same school attended by her sister. I cried. You see for several years I'd assumed that she would go to mainstream school. I checked them out for wheelchair accessibility. I put her name down on the lists. In the intervening years filled with battles with the State to get her any education at all, I'd forgotten my early optimism, until I got that letter.
The other time was much earlier, just before the battles began.
It was the occasion of her last birthday party.
When she was three.
There were later parties at school, and at her club for children with special needs. But this was an ordinary children's birthday party, with toys and games, and cake. And she looks a little lost and even slept through some of the fun. The other children had a great time, but already they were playing with each other, rather than with her.
The other reason that these pictures are bittersweet is because it's not only the State, the media and society that ignore the needs of people like my daughter. Sometimes it's the disability community too. All the talk is of inclusive education, living independently in the community, assisted decision-making, employment opportunities, yet rarely do they acknowledge the children and adults for whom these ideals will never be relevant. My daughter who cannot read, write or speak would be lost in a history class about the 1916 uprising, she would be vulnerable living in the community, she does not have the understanding to make most decisions (unless chocolate cake is involved) and she will never hold down a job - though I joke about her chances as an A&R scout or a hair model.
It's like they become invisible, partly because many families find it too hard to bring them outside the home. The ironic thing is that if you meet my daughter or anyone like her, you'll realise that they are more visible than most. They're unlikely to get lost in a crowd. They may look or sound a bit different. They are small in number, but high in need. They are children and adults with severe, profound and complex medical needs and disabilities. Until recently most would have lived in institutions, and I'm not the only person who wonders if the State thinks that it might actually be easier to look after adults like my daughter in institutions rather than providing the many and varied facilities they need in the community.
The problem is that children with special needs have the same constitutional rights to an education as others, but they have no rights once they reach 18. I hear of organisations refusing to provide day services to some adults because providing them would be too costly, or of respite being withdrawn because someone's needs have become "more acute". Families like mine are being pushed until we drop. And when we do, who will pick up the pieces? And the cost of caring for our children?
Please remember us if you are voting in the Irish election on Friday, because none of the political parties have really bothered. None of them have a joined up policy on disability. Yet 13% of the population live with disabilities, and many more are caring for them. So we should be of more interest, but sadly those on the outside mostly ignore our needs until disability comes knocking at their door. Unlike the election candidates who have done very little door knocking at all.
The world is long long way from being inclusive for people with disabilities, especially those who are very different. And that's why Smiley's third birthday party was her last.
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