It is 5am. I have had an interrupted night’s sleep. Nadia seemed to press her buzzer every hour. The buzzer is there to get attention if she needs something and often it’s very simple like her hand is sticking out of the covers and is cold, or she is in an uncomfortable position, or the covers have slightly fallen off, or if she needs a drink.
I am the only one in the house that hears the buzzer even though our bedroom is the furthest away from Nadia’s room. I have always been the only one who wakes up despite her bedroom being next to our live- in volunteer/Pa’s room, opposite her eldest brother Sean’s room, and below her sister Reay’s room. I must sleep with one ear wide open! I am trained and programmed to wake up. Sometimes I even wake up and think I have heard the damn thing and I wonder through in a sleepy daze to find out it was just my imagination. Andy sleeps on. He only hears it if I elbow him and wake him up on the occasions that I honestly, just can’t physically get up and do that walk to her room. I have so many thoughts in my head that I decide I may as well come downstairs and write.
My mind is ticking away after yesterday’s meeting down at Bedford University – 4 hour’s drive away. Nadia, Andy and Sarah E. (the PA) had gone down together the night before and were home by 830pm the following night. Andy had given me a brief rundown of how it had gone before he got himself a rather large glass of wine and put his feet up. It had not gone well.
The meeting had been with the Disability Officer, the head of the Education Department, the course tutor of the Disability Studies course that Nadia had been offered a place on, and some Welfare Person. Then there was Andy, Sarah, Nadia and interpreter – plus the team from Choice Support who we had called in to help Nadia work out how she and us could manage such an enormous move that had already involved months of planning. Andy had spent hours writing the Support Plan for Social Care, and I had spent many phone calls trying to sort out the Student Finance side. Nadia had also spent weeks thinking and planning – she had flip chart paper stuck all round her “office” area with mind maps, planning tools and time lines. Moving to Bedford was going to be no easy task. I was the risk manager and for me there were an awful lot of “what ifs”. This was Nadia’s dream and we needed to make sure she would be safe, happy and have a positive experience.
At the beginning of the Bedford meeting the head of the department told Nadia and Andy that the 2014 intake of the Disability Studies course would be the last one. It would therefore finish in 2017 and there would be no more courses run. We know, and they knew that it would take Nadia longer than three years to complete a degree. She would need to be there after 2017 but this would not be possible.
We know, and they knew that the university would also have to top up the £20,000 grant to around £60,000. Disability Studies courses are expensive to run when they attract disabled students. Deaf Studies courses attract deaf students who require interpreters and many of them have stopped running at other Universities.
Nadia told me when she got home that her body had been shaking whilst the interpreter was signing and she was so shocked at what she had heard that she kept saying “sorry, I don’t understand” on her communication aid. There was no offer of a reasonable adjustment or support for Nadia to do the course in 3 years. There was an assumption that she would want to go somewhere else.
Nadia has always dreamed of going to University ever since she went to high school. It was one of her dreams in her Person centred PATH (Planning Alternative Tomorrows with Hope) in 2009. We held the PATH meeting outside on a sunny June day – there were about 30 of us and the MP and social workers had even popped in to see how the process worked. Two wonderful women called Sue Harris facilitated and Kath Broomfield took the role of ‘graphic designer’ for the session. Nadia’s PATH was not just a work of art but has been a tool that we have used over the last 5 years to make sure that those dreams became reality.
At 22 years old Nadia is more of a woman than most women could ever be! Her tenacity, her positivity, her resilience, her patience, her determination and aspirations amaze and wonder most of who come into contact with her. After dinner we went upstairs and she pointed at her mind maps and posters around the walls and told me to take them down. She burst into tears. Her tears were not for her she said, but were for the next generation of young disabled children who are growing up into a different world. A world of cuts, savings and poor excuses.