It’s hard to feel any sense of pride or citizenship living in this country when you have a disability. (Rosaleen McDonagh)
We ran for the best seats the moment we got out of the car. Unfortunately, we all had our own opinion about what those seats should look like. Beside the window, but on which side? A table in the middle, but with separate seats or a bench? There were endless options. So we ran off into different directions.
Once each of us had found their own perfect seats and table, we were faced with the challenge to find the rest of the family without giving up the table and seats. So we left our bags and jackets spread out and started to look for each other. Finally, we agreed on just one table and seats, and settled.
Next came the breakfast. Buying the same ‘full breakfast’ would have been the easiest solution, but far too expensive. So we bought a combination of different breakfasts, got another set of plates and cutlery, and shared. In the meantime, I studied the maps.
Today is different. I’m on my own, bringing Pádraig’s new car, so generously given to him by dear friends, to Hamburg.
So I bought my own ‘full breakfast’. Sat down on the first free table I found. Realised that I had no map with me (honestly, who on earth is still using maps these days) and will not have a working internet connection in the U.K. (mmmmhhhh). And started to read the Saturday Irish Times.
Probably for the last time. It’s so depressing.
There is a long account of the case of ‘The Midland Babies’ in the Weekend Review, starting with the assertion that “A series of newborn deaths at Midland Regional Hospital, in Portlaoise, was exposed only through the grim determination of five bereaved families, and some chance encounters.” The article recounts how the families had to struggle, over years, just to find out what had happened to their babies. Some of them spent years trying to encourage the HSE to investigate the deaths, trying to help the HSE with what they knew about their children’s deaths – only to find out, eventually, that the HSE had known the cases and their details all along, had, in at least one case, carried out an investigation without even telling the parents of the dead baby. The truth only came out and HIQA’s investigation only took place because the parents mobilised public opinion.
This is how you get justice, it seems.
Next page: an article by cerebral palsy sufferer Rosalyn McDonagh highlights the love by many in the Irish disabled community for Christy Brown. Now, an exhibition celebrating wheelchair using artist Christy Brown is opening in the Little Museum on Dublin’s St. Stephen’s Green. Unfortunately, the building is a protected structure and has no wheelchair access. Rosalyn writes, “In the case of this exhibition an audience of central importance is being ignored. It is a missed opportunity for diversity and sharing. … On this occasion, disabled people don’t seem to matter. These transgressions are not incidental or accidental. If there’s a climate of disrespect and exclusion they become the norm. It’s hard to feel any sense of pride or citizenship living in this country when you have a disability. Seeing an exhibition like Dear Christy would have put a smile on our faces.”
Disillusionment and frustration instead of smiles on the faces of people who are in such a need of occasions that put a smile on their faces.
Yesterday evening, I met with friends who are helping us to build an extension for Pádraig on the ground level of our house. It was another, just incredible, demonstration of the love and support that he is generating, bringing out the best in so many people. Organising this on our own would have been very difficult. Now, I’ m going back to Pádraig to tell him about the new rooms and all the enthusiasm of the people helping us to get them ready for him.
Pádraig will need to get home. And we all will have to make sure that there will be loads of smiles, inclusion, life. We will have to work very hard to ensure that people with a disability can feel a sense of pride or citizenship living in this country.
It won’t be easy. But worthwhile and worth of true Dreamboaters.
P.S.: It’s 2:57am on Sunday and I just arrived. However, this will still be Saturday’s blog:)