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Christine Barton - living an ordinary life in an extraordinary way!
Strategies for remaining independent
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admin2 in the usergroup ‘Administrators’

Living with quadriplegia - a tribute to Christine Barton

Part 1 - Personal and medical

My partner and the inspiration behind Accessible Property Register, Dr Christine Barton MBE, died in March this year.  Christine had a severe form of multiple sclerosis which progressively incapacitated her, leading around 15 years ago to quadriplegia and the need for 24 hour care.  A slight movement of her head remained but that was it.

My aim in writing this blog is to share the strategies that Christine used to maintain an extraordinary level of independence and control right up until she died.  It is my hope that others may be able to benefit from our experiences and perhaps live a little more independently as a result.  This is Part 1.  Future episodes will cover personal assistance, funding, mobility, technology, and communication.

Christine was a worker, she's always worked and, despite quadriplegia continued to work and to lead an active social life right up to the week that she died.  People who knew her would remark that she lived an extraordinary life.  "No,' she would say, "I try to live an ordinary life - I just have to do it in an extraordinary way."

It's this 'extraordinary way' and level to which Christine managed to maintain her independence that I want to record, because the strategies that she used should be open to all, and maybe knowing more about what is possible could help others in similar situations and facing barriers that could perhaps be overcome.

Christine was first diagnosed with primary progressive multiple sclerosis in either 1982 or 1983.  At that time Christine was a teacher and later, an education adviser.  In 1993 increasing levels of impairment meant that she was forced to take early retirement and it's at this point that I feel her 'real' career began.  

Since she retired and significantly, when she was already quadriplegic she has served as a member of the governing bodies of the General Social Care Council and the School for Social Care Research, and as a Trustee of Voluntary Action Sheffield.  Christine has been a Disability Adviser, a campaigner for inclusion and equality for disabled people, a developer for direct payments, a disability adviser to Sheffield City Council, a founder member of Inclusive Living Sheffield, a disability awareness trainer employed by Social Services departments, and by Sheffield University.  Only four days before her death she attended her final meeting as a member of Sheffield LINK.  And that's just a snapshot of her professional life!  In 2000 she was honoured with an MBE for services to disabled people.

Christine did bring two important advantages to this phase of her life: firstly she had the professional qualifications and experience to work at senior levels and to be listened to with respect by decision-makers.  Secondly, although the level of physical impairment created by her MS was devastating, her brain and speech were largely unaffected.

So what strategies does it take to remain a busy quadriplegic professional with national and local responsibilities?  In outlining these strategies I do attempt to show where there was a financial cost to ourselves and I'm aware that sadly, this may exclude access for some people to some of the options.  However, by far the highest proportion of the support costs (personal assistance and equipment) were met by NHS and Social Services at little or no cost to ourselves.  Some other costs could be significantly reduced, for example by buying second-hand.

Personal decisions

The first, and perhaps the most crucial decisions that Christine took in maintaining her independence were personal and medical rather than professional or support related.  Starting with overcoming the tyranny of the toilet!  Even before she took early retirement life was dominated by finding the next disabled loo and getting there quickly enough.  It takes over your life and resolving this issue was critical for Christine.

Christine's solution will not be one that everyone would want to consider, but it did turn out from Christine's experience to be both right and effective.  With the support of her GP and the relevant consultants she opted for an elective ileostomy and suprapubic catheter*.  At a stroke the tyranny of the toilet was banished forever.  As she progressively lost her remaining mobility it is difficult to imagine how her life would have been if this decision have not been taken.  Without this it seems unlikely that Christine could have undertaken the demanding professional roles that occupied much of her life for the next 15 years, a number of which involved travelling and the ability to sit and concentrate in meetings without being distracted by toilet needs!  It was a decision that she never regretted and I'm pleased to be able to say that, although both ileostomies and suprapubic catheters need regular management (bags made emptying and changing, a task undertaken by myself and Christine's PAs) both remained remarkably trouble-free throughout her life.  

Cost to ourselves - nil

If you would like more information about the information in this blog then please use the 'Reply' button below, or contact me at conradh@accessible-property.org.uk

* An ileostomy (like a colostomy) brings the bowel to the surface of the abdomen where waste material empties into a bag.  A suprapubic catheter enters the bladder just above the pubic bone and tends to be less problematic long-term and needs changing less often than a conventional catheter.


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