At 22 yrs old she is more of a woman than most women could possibly ever be

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. 

 

 

 

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21 thoughts on “At 22 yrs old she is more of a woman than most women could possibly ever be

  1. Katie this is lovely but also very sad, Nadia is an inspiration to many young disabled people and its auch a sad world we live in that cuts are affecting us so badly. Dont give up hope though because if you give up hope and Nadia gives up hope then what does that leave me for my son. Sending you all my love dear friend and tell Nadia I love her xxx

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  2. My heart goes out to you all. If there is a solution to this huge disappointment you will find it. Don’t give up on your dreams nadia just remeber how far you have come. And katie hearing that buzzer is something only a mother tunes into. Big hugs xx

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    • Nads is strong. she needs now a purpose for moving out of home other than Uni. And not quite so far away. She will continue to dream as she has so many wonderful people around her who believe in her. I can’t imagine how hard it must be not to have that support. I often think about those who have survived institutions and how they must have got the support from others in the same situation when they did not get it from families.
      thanks for commenting. come and see us in sunny Halifax!!

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  3. This makes me so angry and so sad. There must be a way for Nadia to achieve her dream. What about the oxygen of publicity and getting Stephen Hawkings on board. Most people think he is the only disabled person who is capable of saying anything remotely clever and are continually amazed when told there are an army of people who express their thoughts through communication aids. I do think Katie Cryer suggestion of a documentary on AAC users , exposing these inequalities would be great. Could you fight this on human right issues? I suppose you have thought these things out. I am getting ready to take them all on as regards Lachlan on various issues and lack of provision for a more equal life. My heart goes out to Nadia and your family who have worked so hard to allow Nadia to achieve her potential. Love to you all. You mustn’t give up as you are shining examples of parent power trying to change things in a society which really doesn’t care unless forced to by law or shamed into by bad publicity. Nadia you are more of a woman than most women could possibly ever be.

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  4. Im deflated and flattened for Nad’s, you and your family, resilience is hard to find after news like this, Im speechless, Nad’s is much more than a woman, she is an amazing, wonderful person with a fantastic family… send her my love, back to the planning when she is up for it… it sooooo doesn’t end here………….xx

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    • I loved your planning that you did (the one you did without us!! ha ha, I didn’t know about it till Nads showed me the other week!) with Nads and your insight into her world and ours. Your support and friendship has been part of the important stepping stones towards Nadia’s resilience (and the other young people you come into contact with). You have been a vital link in our lives. Thanks Sue Harris!

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  5. Someone once said to me that this is a marathon, and that we need to pace ourselves. We know that the biggest barriers are attitudinal and they are the hardest to change. Life is challenging enough without battling against organisational barriers and the attitudes. We need to look at what we have, stay positive and put our energy into the next stage. And at the same time leave our footprints behind and let the establishment know what we feel and think about them. Nadia and Andy are going to do that themselves.

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  6. Never give up…that’s what hope means! Something better will come along for Nadia…stay positive & smile in the face of negativity. I like your ‘footprints’! God bless you, Katie & Nadia & your family.

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    • Nadia’s name means hope !
      thanks for your lovely message. Nadia did some retail shopping in Leeds today.! she has booked a holiday with PAs on 20th May so it has come at a good time.
      She has a lot going for her and a lot of amazing PAs who embrace the opportunities out there fortunately.

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  7. As you know, Katie, I’ve blogged Nadia’s letter. If you think a Facebook/change.org campaign is worthwhile I would be more than happy to support you both with this through Same Difference.

    All the best

    Sarah Ismail

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    • thanks for the comment. it is up to Nadia. the biggest battles are against organisational and attitudinal barriers. it is not about the course necessarily but about the way that they have conducted themselves and their lack of awareness on the impact. They have no idea that thanks to a mainstream education Nadia has had a dream of going to Uni like many other young people but that to achieve her goals and dreams it is so much harder work. Each day she went to school she faced considerable barriers and rose to the challenges with a smile. that was an essential part of her education and part of her foundations to stay strong in the adult world. Stay in touch.xxx

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      • I had very similar experiences during mainstream education which is why I find Nadia’s troubles with the uni such a shame. I would like to help you both in any way I can.
        I can clearly tell from all I have read that Nadia has an amazing mother. As I keep telling my mother it is the support of supportive and loving parents that allows disabled children to accept our differences and challenges and to celebrate these and find our talents.

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      • that is so good to hear from a disabled adult. thank you for your wise and insightful comments. a wonderful friend told me the other day that as parents we we want to give to be able to give independence with a safety net. When I do training with parents and professionals I often start by saying how we feel about our disabled children impacts how they feel about themselves, and how they feel about themselves in a world that disables them is fundamental to their lives.
        Please do keep in touch and check out Nadia on facebook as I am sure she would appreciate a message from you directly. did you see her own blog. ??

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  8. Hi Katie – after everything you all worked for – this is a real blow and setback.
    You have all successfully navigated and overcome huge obstacles over so many years – I’m confident you’ll also *somehow* be able to re-set the GPS button on Nadia’s PATH…
    Thinking of you all
    David

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  9. Dear Katie and Nadia, as an ardent trade unionist and a member of the NW regional equality forum your post horrifies me. As you probably know it takes Trades unions a long time to get our voices heard in parliament……….but we do get there eventually. If this government continues in power for the next five years I believe that our voice as aTU and as a voice for all the equality strands will be silenced. However I would like to start with wording a motion to next years equality conference re whats happened to Nadia. I would value your input. If you were face to face with Gove or Cameron, what would you, personally,ask for for Nadia and for those that come next?

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    • I am sure if you ask Nadia to come and speak at the conference she would be interested! she and I have spokent before with the Unions in Halifax with Linda Riordan about the cuts – that was about 4 years ago. I totally agree that it needs to be joined up and the voice of disabled people to be part of that conference. I will think about that question and get back to you. You can always look at Nadia’s own blog too and facebook her or if you wish I can email you directly her email.
      thanks for bothering to comment too and read the blog!.xxx

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