We’ve been talking.

And my head is spinning.

There are many parents here with their sons and daughters. There are some sons and daughters here without their parents. Over the past weeks, we’ve been talking to most if not all of them. There are incredible personal tragedies. There are even more incredible stories here of not just survival but of recovery.

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Parents who were told that there kids were not going to survive, that they would never be able to walk, that they would be blind, that they would be deaf. There are young people here who were told the same by their doctors. There are stories of patients who were not just given a wrong diagnosis but whose injuries were caused by ‘treatment’ that was meant to help them.

There is one patient being treated whose condition was caused by an infection he got when spinal fluid was drained – a procedure we were told (by a German doctor) was as risk free as taking a blood sample.

imagesThe thing is: talking to other people in a similar situation does not change the situation we are in. However, it does change our perspective. Dramatically. There is so much encouragement. So much support. So much proof that the right therapy makes a huge difference. Even after many years people are getting better, becoming more aware, becoming more independent, taking more charge of their lives.

There is a building full of heroes here.

Inclusion Ireland protested over the past couple of days and nights in Dublin and met Taoiseach Enda Kenny today. Protesters are calling on the Government to take action in the following areas:

  • Restore funding in disability supports
  • Introduce direct payments for persons with disabilities
  • Protect Personal Assistant (PA) supports
  • Ratify the UN Convention on the Rights of Persons with Disabilities (UNCRPD).

Not sure whether you heard of the death of a young woman, Lauren (Rosy) Johnson, on 7 September. A family member at her funeral said that she went to Beaumont Hospital to seek help. 12 hours later she was dead. Beaumont have questions to answer, he said.