Help children to understand adoption and the diversity of different families

diversityHelp children to understand adoption and the diversity of different families with this illustrated rhyming story by Shanni Collins.  The rhyme is taken from her new book, All You Need is Love, which celebrates families of all shapes and sizes and encourages inclusion and acceptance in a child’s relationships. Each page is dedicated to a different family, with stories exploring sexuality, adoption, fostering, disability, race, gender diversity and illness.

Download the rhyme

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How important is empathy within our care system?

Frightened

Bo Hejlskov Elvén is a Clinical Psychologist, and author of Frightened, Disturbed, Dangerous?, Disruptive, Stubborn, Out of Control?, Confused, Angry, Anxious? and Sulky, Rowdy, Rude?, based in Sweden. He is an independent consultant and lecturer on autism and challenging behaviour, and an accredited Studio III trainer. In 2009, he was awarded the Puzzle Piece of the Year prize by the Swedish Autism Society for his lecturing and counselling on challenging behaviour. 

Frightened, Disturbed, Dangerous? Those words are often used to describe people in psychiatric care. Historically, schizophrenia is one of our oldest diagnoses still in use. Our oldest diagnoses describe people whose behaviour was unpredictable and clearly different than that of other people. Today, we still see descriptions of people with psychiatric conditions described as disturbed and dangerous despite all the knowledge we have contradicting those descriptions. The words we use to describe people affect the way we think about them and our methods for working with them. If we believe that a person is dangerous, we will keep our distance and even react faster to the person’s behaviour. We are also more prone to react with force.

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Specific Learning Difficulties: What Teachers Need to Know; an interview with author Diana Hudson

Specific Learning DifficultiesDiana Hudson is a tutor and mentor to students with Specific Learning Difficulties (SpLD), as well as a subject classroom teacher (biology) and learning support teacher and SENCO. She has a diagnosis of dyslexia, and is a parent to four children, three of whom have been diagnosed with SpLD. We talked to her about the inspiration for her book Specific Learning Difficulties – What Teachers Need to Know, and she shares her advice for teachers on how to support children with SpLD’s. 

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The Making of ‘Dad’s Not All There Any More – A comic about dementia’.

Alex Demetris is an illustrator, cartoonist and maker of comics. He completed an MA in Illustration in 2012, which resulted in a comic based on his family’s experience of coping with his father’s dementia: Dad’s Not All There Any More – A comic about dementia. Here he shares a little about the process of creating the comic and some of his pre-publication sketches (click to enlarge the images).
Alex also co-authored Grandma’s Box of Memories: Helping Grandma to Remember.

The idea for Dad’s Not All There Any More came to me whilst I was studying for an MA in illustration at Camberwell College of Art.  I had been making comics and drawing cartoons as a hobby for a number of years, and decided to enrol on the MA to see how good I could get by focusing on my hobby full time. Continue reading

Your Role as Your Child’s Advocate

Judith Canty Graves and Carson Graves are co-authors of Parents Have the Power to Make Special Education Work: An Insider Guide, and are the parents of a son with learning disabilities who is about to graduate from college. They live in Massachusetts.

As the parent of a child with special needs, one of your most9781849059701 important jobs is to be an advocate for your child in the school setting. You are vital to the success of your child’s education. You cannot be a passive observer; you need to be involved.

Here are some reasons why:

You Are the Only Permanent Member of Your Child’s Team

You are the only permanent member of the Team that decides what services and accommodations go into your child’s Individualized Education Program (IEP). New people who do not know you or your child will join the Team each fall and leave it the following spring. Occasionally a Team member might stay on for more than one school year, but most do not.

Schools Think Short Term, You Think Long Term

You and the school see your child’s education from different perspectives. In a way, this is natural since school personnel are focused on the current school year. You, on the other hand, are looking ahead to when your child becomes an adult. These different timelines can result in a source of conflict as you may want services that will help your child acquire skills needed in later years, but the school may only want to provide services that will meet more immediate needs.

As an example, students today are not given much instruction in handwriting and instead are taught keyboarding. But functional handwriting has not disappeared from the adult world. Our adult children will still have to fill out job applications or medical forms legibly by hand. Most of us are aware of other basic skills that may not have an immediate application in the classroom but which we know our children will need in later life. We have to be patient but persistent advocates for teaching these skills.

Skills Not Learned in School Have a Lasting Effect

Take the role as your child’s advocate seriously, because eventually your child will leave the public school. If he or she does not receive an appropriate education, who will help your child in a post-high school setting to balance a checkbook or fill out a job application? Many children who do not receive an appropriate education will need to take remedial courses after high school to learn skills they missed when they were younger.

What Parents Can Do

To become a better advocate for your child’s education, we recommend the following:

  • Periodically study your child’s special education documents in chronological order to better understand the progression of your child’s education. Trends will become apparent as you study the details and analyze the data over time. You must do this since Team members are transient and they don’t see the “big picture” that you can see. This exercise will show you the areas where your child has made progress or areas where he or she hasn’t.
  • Compare your child’s goals from year to year. If some goals never change, that means that either the goals aren’t appropriate or that your child isn’t making effective progress. Also compare the service delivery grid for each goal. Are the frequency and duration of services adequate to achieve the goal? If you notice that services are being decreased and the goal hasn’t been accomplished, you will want to discuss this with your Team.
  • Keep a notebook in which you record the important details of conversations you have with school personnel. If there are any action items, make them the subject of a follow-up letter or email to that person. If there are any misunderstandings about what was agreed to, this will help correct them before too much time and too many opportunities have passed. This improves positive communication with the school.
  • Keep a parent journal of your observations of your child’s experience. Record details about progress or lack of progress, and be sure to date your entries. Write in this journal on a regular basis and review it periodically. Progress almost always happens gradually, and you will only begin to see it when reviewing entries from past weeks, months, or even years.
  • Review your child’s IEP progress reports as you receive them. Compare the reports with the IEP goals and make sure these progress reports reflect your own observations as recorded in your parent journal. If these reports do not accurately describe your own observations, be sure to question these reports in writing to your child’s special education liaison. This will document your concerns.
  • Realize that every year of your child’s education matters. Time is essential in special education. If there are too many delays getting services, your child may fall behind. Each new year builds on the skills learned the previous year. It is remarkable how quickly a school year can go by and how the academic demands intensify as students advance in the grades.

Being your child’s special education advocate is an additional job for you on top of all the other things you are already doing. But it can be one of the most rewarding jobs you will ever have. Giving your child an appropriate education is an essential foundation for a productive future.

Learn more strategies for success in the Graves’ book, Parents Have the Power to Make Special Education Work: An Insider Guide. You can also discover more resources and check out their blog at their website.

FASD: A life-long neurodevelopmental disability that needs to be SEEN

Liam Curran is a PhD INDI Social Sciences student at Concordia University, Montreal, Canada. He has over 25 years’ experience working with young people in residential homes, child and family social work and children’s disability services social work, and is also a member of the McGill University Centre for Research on Child and Families (CRCF), Montreal, Canada. In this post, he explains the biggest obstacle for many children with FASDs and those supporting them – having their disability acknowledged so they can access much needed support, and suggests how we can improve diagnosis and support for people with FASD.
You can find out more about FASD, how it affects individuals, how it can be identified, and how best to support those with FASD in Liam’s co-authored book, 
Understanding Fetal Alcohol Spectrum Disorder: A Guide to FASD for Parents, Carers and Professionals.

A life-long neurodevelopmental disability that needs to be SEEN

It has long been established that Fetal Alcohol Spectrum Disorders (FASDs) have a significant impact on all aspects of child welfare provision. Perhaps one of the most recognised publications of the modern times was developed on the evidence of eight children suffering from ‘failure to thrive’ in the Washington Child Welfare system, who were taken by social workers to the clinic of paediatricians, Dr David Jones and Dr Ken Smith. The rest is well known thanks to the paper written by Smith & Jones which became a seminal moment in society’s understanding of fetal alcohol, launching a robust level of research and public interest around the world.

Understanding Fetal Alcohol Spectrum Disorder coverThere is still a compelling need for child protection and welfare services to recognise the burden and impact of FASD on the services they provide. Recognition can aide the prevention of this disability, when allied health personnel become champions of change by imparting the ‘no safe level of alcohol consumption in pregnancy’. When responding to this ‘compelling need’, it is imperative that we consider our current principles surrounding a child’s security and overall development. In intervening for cases of health-related or educational neglect, it is also important to consider the neurodevelopmental factors associated with FASD. As stated in the opening paragraph, the eight children taken to the Washington clinic in the early 70’s were initially labelled with a ‘failure to thrive’; neglect and FASD can be finely intertwined, and require astute skills for Social Work personnel to differentiate.

Perhaps intervention by social workers is required when the caregiver cannot control/manage the behaviour of the young person in their care. FASD has long been seen as a significant concern in the area of a child’s development; problems identified in these children include immaturity leading to behavioural, social and academic challenges when set against the normal developmental milestones of developmental expectations. Poor self-regulation and sensory integration is equally well acknowledged within this cohort of children and such developmental deviation and subtle abnormality can have a significant impact on how the child manages the day to day expectations within a regulated society. Sadly, these children commonly present in child welfare intake systems, but their neurodevelopmental/neurocognitive disability is rarely seen and acted upon. Both neglect and behavioural problems are usually among the two highest categories of concern referred to state systems of child welfare and protection, and it’s within these two categories that FASD is most common.

It is also important to acknowledge the cumulative effect of yearly estimates of FASD births and how this impacts on child welfare services. In the UK, the yearly estimates of FASD births is set at 7,000. As child welfare services are delivered for children age 0-18, the cumulative number of births would be 126,000 across this age span of childcare provision. With a large body of evidence pointing to 50-60% of children born with an FASD condition entering the child welfare services, there can be no argument that FASD is having a disastrous but largely unseen impact on the service. Equally, what research has repeatedly shown and demonstrated is that the prevalence rates of FASDs lands on both our fostering and adoption communities. This in turn will lead to a fiscal burden carried by the child care providers of such services, demonstrated again in a large body of research findings.

Professional acceptance of FASDs’ neurodevelopmental and neurobehavioral presentation is vital to providing the support needed to these children and caregivers. The range of psychosocial interventions that have a proven success rate with these children are required to be common place in social work education modules of child & family teachings. Equally, these skills need to be honed in competency based education provided by employer organisations as part of service development goals.

How can we improve the trajectory and prospects of children suffering prenatal alcohol exposure?

  • National policy advisors need to implement FASD as a recognised disability within disability legalization and policy developments.
  • Currently available early intervention specialist services need to have the skills and training to Identify, Screen & Refer children for clinical assessment
  • Improve the service accessibility of individuals and their caregivers in accessing state services of supports.
  • FASD competency education should become mandatory in state services of professional development protocols.
  • Link current state education strategies on alcohol harm should be altered to firmly include the prevention and understanding of FASD within society.
  • The Social Work profession needs to reclaim, and become a stronger advocate for, the psychosocial needs of both the individuals and caregivers of those living with this disability.

There is a pressing need for this unseen disability to be recognized and acted upon in all aspects of child welfare interventions. Failure to do so is casting these children into a range of secondary disabilities, where they struggle in life with homelessness, mental illness, addiction and clashes with the criminal justice systems.  How can this be achieved?

In order for social work professionals to become stronger advocates, they need to be supported in their skill development on a number of levels.

  • The disability of FASD needs to be fully taught within social work undergraduate education by the university bodies responsible for developing future social workers.
  • All child welfare and child protection service providers who are responsible for professional development of their workforces to commission professional FASD education modules from providers qualified to deliver such education
  • Equally for Social Work to function effectively in responding to FASD, they need FASD as a health disorder to be understood by allied health professionals, policy makers and the public in general.

You can find out more about Liam’s book Understanding Fetal Alcohol Spectrum Disorder: A Guide to FASD for Parents, Carers and Professionals, read reviews and order your copy here.

What it means to be a transitions social worker

Jill Hughes and Natalie Lackenby are part of a Young Adults Team in Worcestershire that has a dedicated focus on supporting young people with disabilities through the transition to adulthood. As the authors of Achieving Successful Transitions for Young People with Disabilities, Jill and Natalie briefly describe their experiences as transition social workers from their unique point of view.

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Transitions Social Work

We are part of a Young Adults Team in Worcestershire that has a dedicated focus on supporting young people with disabilities through the transition to adulthood. We are fortunate to work as a team that has a co-ordinated approach to transition, but recognise that not all workers are so fortunate and some have to navigate these complex issues alone. Having been in this position previously, we know how lonely and bewildering transition can be and we looked for a comprehensive text that would support our practice in this area without success!

Transitions has traditionally been a service area which has been overlooked and under-resourced, and often seen as an add-on to the work of adult teams.  However, in these times of financial austerity there is a growing realisation that resourcing these complex pieces of work in a timely and efficient manner is actually cost effective.

The implementation of the Care Act 2014 has placed a framework of duties on Local Authorities for social work with young people in transition. This has brought the whole area of transitions into focus with clear roles and responsibilities.

In Achieving Successful Transitions for Young People with Disabilities we included practical case studies so as to highlight some of the challenges faced by workers, and offer suggestions of how to overcome such challenges. The importance of empowering young people to be more informed about the transitions process is essential, but equally we need to ensure that practitioners are equipped with the knowledge to successfully support young people to navigate the transition process and make their own decisions about their future.

Natalie’s Background

Social work is generally considered to be a tough job and as a newly qualified social worker in a learning disabilities team I felt ready for the challenge ahead. When I applied for the job, I remember thinking what a vital role this was and I was sure that there would be a wealth of information and resources to draw on. I was fortunate to be in a supportive and friendly team when I started my career almost 12 years ago, but what I soon found to be the most challenging part of my job surprised me somewhat.

I was different; I was the transition social worker. Unlike the other social workers in the team, my role focused on supporting young people from 14+ to think about adulthood and support them through a transition from children’s to adult services. It became evident that the issues faced by the young people I worked with differed from those faced by clients other team members worked with. Similarly, the challenges faced by my colleagues in their roles, were significantly different to the challenges I experienced in mine. I looked for guidance and found lots of information aimed at parents and carers but limited practical information for professionals about navigating the transition process.

I often found myself as a lone voice in a large school review trying to explain a number of systems, processes and policies to anxious parents and young people. In fact it was pretty lonely as a transitions worker.

My colleagues remained supportive, offering and advice and information where they could, however, I always felt that my role was unique, combining traditional social work, with a strategic approach that identified a need for future service provision. In 2012, the council recognised the need to have a strategic approach to transition and developed a county wide transition team to which I was transferred, the Young Adults Team.

Jill’s Background

I moved to the Young Adults Team in 2012, as it was being set up.  My background was primarily older people, but I had also worked with younger people with a physical disability. Prior to social work training I had also worked as an advocate and support worker to adults and children with a learning disability.

I was very apprehensive initially about a move into team where I was unfamiliar with the specific work, in an area that is often complex, with the added complication of it being a brand new team.  When looking for textbooks or practice guidance to support me with the move, I was surprised that there was nothing available to guide practitioners, and this left me further in the dark about what transitions actually meant, both to the workers and the young people experiencing it.

As a newly set up team, we all grappled with the challenge of transitions, but luckily we were in the position of learning from each other, and sharing experiences both positive and negative.

Jill Hughes is an Advanced Social Work Professional in the Young Adults Team in Worcestershire, UK, which manages transitions for young people with disabilities and complex health needs between Children’s Services and Adult Services. She has led on Practice Development Groups, facilitated reflective and interactive supervision in both one-to-one and group sessions, and she has a particular interest in personalisation and person-centred planning. Jill also provides sessional lectures to students completing access courses, BA and MA studies at the University of Worcester and Heart of Worcestershire College.

Natalie Lackenby is a social worker in the Young Adults Team in Worcestershire, supporting young people with physical and learning disabilities through the transition to adulthood. Natalie has worked as a Transitions Social worker since 2003, and prior to joining the Young Adults Team, she worked as part of the community learning disability team. Natalie has a BA in vulnerable adults and community care, and she has given lectures around learning disability, legislation and policy and the transitions process to undergraduate and postgraduate students at the University of Worcester and Heart of Worcestershire College.

To learn more about Achieving Successful Transitions for Young People with Disabilities click here.

There is an alternative if you want people to live better with dementia

Shibley Rahman completed his PhD in frontotemporal dementia at Cambridge University, commencing a lifelong interest in the timely diagnosis of dementia. In this article he explores some of the work being done to reduce reliance on medication and increase our understanding and use of non-pharmacological interventions; looking to the future of dementia care.
You can learn about Shibley’s book,
Living Better with Dementia, here

Currently, Alzheimer’s Disease International estimate that there are 47 million people around the world living with dementia. Whilst the policy planks of ‘prevention’ and ‘cure’ continue to attract attention, there is concern amongst many that the people trying to live better with dementia don’t get caught behind.

Gordon-Swaffer-_Living-Better-w_978-1-84905-600-7_colourjpg-printThere’s been a concerted effort to look at the cost of drugs in the NHS in recent times. ‘Innovative drugs’ have been a big deal in the service, and it is reported that new innovative drugs approved by NICE between 1999 and 2004 added £800m a year to the UK drugs bill.

Irrespective of the cost of the drugs budget in England, one is right to query whether patients are being given the appropriate treatment based on the current best practice. A temptation of a medical doctor to prescribe a ‘magic bullet’ can easily explain away the ‘over-medicalisation of illness’, leading the Academy of Royal Colleges justifiably to take action earlier this year.

There are probably over 400,000 older people living in care homes, and possibly dementia ‘affects 80% of care home residents‘. With the scale of statistics, one is bound to be concerned at the potential volume of inappropriate antipsychotics scripts for people living with dementia. Prof Sube Banerjee helpfully reported on this issue in 2009 for the Minister of Care Services at the time.

Every chemical medication has its side effects. I am always impressed with the ease at which the pharmaceutical industry is able to market their drugs, given that there are 1000 billion nerve cells in the human brain all connected with one another directly or indirectly in various ways.

With so many different functions of the human brain, such as memory, attention, perception, language or planning, to name but a few, it has been a difficult task to work out which particular ‘hubs’ involving parts of the brain are particularly involved in certain functions.

The exact characterisation of wellbeing in dementia remains an active area of discussion. For example, five psychological needs had been described by Tom Kitwood – comfort, attachment, inclusion, occupation and identity. Identity itself has been subject to volumes of work, some empirical, but apparently the need for identity ‘involves maintaining a sense of continuity with the past, and some kind of consistency in the present life’ (Kitwood, 1997, p. 20).

In my book Living Better with Dementia: Good Practice and Innovation for the Future, identity is a really big deal. I suggest a possible way in which the human brain might be able to reactivate “sporting memories” from his or her own past. I also describe the powerful effect that music can have on the wellbeing of a person living with dementia.

Also, pervasive to my entire argument is that dementia should be recognised as a disability under the Equality Act (2010) and the United Nations Convention on Rights of People with Disabilities. This takes the argument one towards ‘rights based approaches’, imbuing potentially a ‘rights consciousness’ of what all people are entitled to. When you consider that people receiving a diagnosis of dementia can find the whole experience totally disempowering, as described clearly by Kate Swaffer in her groundbreaking work, the idea that some form of reablement or rehabilitation is incredibly powerful.

The human brain is uniquely baffling. According to Professor Nancy C. Andreasan, “When the psychologist Kay Redfield Jamison looked at 47 famous writers and artists in Great Britain, she found that more than 38 percent had been treated for a mood disorder.”

Some people when they develop a dementia acquire novel artistic talents. How this happens is still a mystery, but it gives a whole new dimension to the term ‘living better with dementia’.

Also, a few months ago, I was asked to introduce by Lucy Frost, a specialist nurse in dementia, a film in a small church in Brighton, England. This film called Alive Inside was a brilliant demonstration of how people living in residential homes would get ‘switched on’ by listening to music from a portable mp3 player, enhancing individual and collective wellbeing. In contrast to medications, a portable mp3 player has remarkably very few side effects, and is relatively inexpensive.

It is claimed that, in Antiquity, Canus, a Rhodian fiddler, used music to “make a melancholy man merry, …a lover more enamoured, a religious man more devout.” One of Alan Partridge’s favourite quips was, “If music be the food of love, then play on.”

Music is a unique phenomenon in being at the interface between emotions, memory and perception in the brain. Cognitive neuroscientists have long recognised that music presents a special conundrum. Only last week, a paper in the prestigious journal Brain was published which sheds light on why music has this unique power even in advanced Alzheimer’s disease. The authors of that particular study hypothesised that parts of the brain, which were relatively unaffected in advanced Alzheimer’s disease, had a special rôle in the appreciation of music (parts of the brain including, perhaps, the anterior cingulate and pre-supplementary motor area).

The relevance of music to residents who live with dementia is all to see in the current series of #Dementiaville, now showing on Channel 4. But in this age of ‘doing things differently’, which is often sadly used as code for cutbacks, there has been a conspicuous reluctance to give non-pharmacological approaches for dementia serious consideration. As England, and other jurisdictions, teeter at glacier pace towards integrated care (and perhaps even whole person care), it is possible a volte face will some day come with the adoption of social prescribing and its offerings.

I feel the way for this alternative view of dementia policy to get momentum is not to have tokenistic involvement of people living better with dementia on a select few number of panels. They must be given prominence in leadership rôles so that they are listened to properly in service design, provision and research. The mantra of ‘there is no alternative’ has had its day.

Reference

Kitwood, T. (1997). The experience of dementia. Aging & Mental Health, 1, 13–22.

Find out more about Shibley’s book, Living Better with Dementia, read reviews or order your copy here.

Twenty years of living with brain injury

Over twenty years ago, Philip Fairclough fell fifteen feet from a ladder onto a concrete patio, causing massive trauma to his head and severe brain injury. Eight years later his book, Living with Brain Injury, was published by JKP. Today, in support of Action for Brain Injury Week, Philip shares with us the progress he has made since writing the book, as well as the lessons he’s learned along the way which are sure to help anyone who has suffered head injury or cares about someone with a head injury. 

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Cover image for ‘Living with Brain Injury’

People often say, ‘Such and such crosses the divide of culture, status, sex, nationality and even religion.’ It wasn’t ’til my book, Living With Brain Injury was published by Jessica Kingsley in 2002 that I realised how brain injury crosses these divides and more – and this was despite my having previously given presentations before groups of litigators dealing with compensation for head injuries, social workers, care givers and hospital staff. It was further brought home to me by the number and types of reviews I read in magazines published here and in the States as well as the letters I have received from carers and sufferers alike.

Things I have learned which have helped me cope in every day life
In the early days, when I saw how my condition was affecting my family, I honestly felt I’d have been better dying. However, since then I’ve come to realise there is always someone far worse off than me and I tell people, now, for me every day is a bonus. Something else I’ve learned, which came as quite a shock, but helped me to try and see beyond the obvious, was understanding why the wives of some of my fellow sufferers, at the rehab unit, left them after their head injury. I remember saying to Pauline, how terrible that they should be abandoned at a most critical time in their life. Her comments on that were quite sobering. She told me that if it wasn’t for the fact that she loved me and  took her vows and our faith seriously, she might have done the same! We’ve now been married for forty two years with still some to go!

One final note on the matter of what I have learned. The OT’s at the rehab unit, from day one, stressed the importance of setting realistic goals and, having achieved them, setting some more. Though this was a strategy I had been employing for years, both as one of Jehovah’s Witnesses and as a salesman, it was an invaluable tool in helping me keep focused on the positive aspects of life and putting the negatives on one side.

Things I wish I’d known before my accident
I wish I’d realised just how dangerous window cleaning was and had taken to heart the warning I was being given by the excessive costs of insurance! Yet for all that, whilst I wouldn’t want to relive the past twenty years nor for my family to go through it all again, I have learned so much that I wouldn’t have otherwise, contributing to ways in which I have changed since before the accident. For example; though it seems that my memories of what I was really like before the accident are flawed, one thing I do remember is that I had very little empathy for people with illnesses. Though my wife had suffered with health problems for many years and I was very understanding of her, since I’d had few serious health issues since childhood, I had no understanding of how sick people felt or were treated or what they needed from others. However, that changed fairly quickly when I realised how understanding and helpful people were to me. And not just friends, family, work mates and neighbors, but even total strangers. Since, I suppose, I expected them to understand me and make allowances for me, I was forced to change my attitude towards those with health issues, regardless of how serious or trivial they appeared to be.

Philip at home after the accident, before the move to Rosehill Rehabilitation Unit. The shape of the skull was caused by the removal of a part of the bone to relieve pressure on the brain.

Philip at home after the accident, before the move to Rosehill Rehabilitation Unit. The shape of the skull was caused by the removal of a part of the bone to relieve pressure on the brain.

Changes in my health
Whereas stamina was a real problem in the beginning, my fatigue requiring me to sleep most afternoons, for the past few years I have not needed to sleep. In fact, I am awake most mornings between five and six and I often work in the garden for two or three hours without ill effect.

Since I have had no seizures for the past fifteen years, meaning that under medical supervision I have been able to cease using anticonvulsants, apart from the freedom I have gained, many of the side effects common to such medication have also ceased or been minimised. This, I feel, has made me easier to live with. You’d have to check with my wife but I think she’d agree! This has also meant I have been driving again for several years and am just in the process of becoming the policy holder for the car insurance, something I’ve not done for over twenty years. I am also no longer classed as disabled which has helped me gain back much of my self worth. I have been working part time for the past fifteen years, back in my old job of selling which is another plus. The one other thing that has changed is that my enforced retirement has allowed me more time to write. Not only have I written my book, I have also written, and had published, sixteen newspaper and magazine articles in the UK and in Malta. I have written five novels, two of which are, at present, doing the rounds with agents, a full length children’s story and I’m currently writing two spin offs from one of my novels. I am determined to get something, in fiction, published! For two reasons: 1) I want to know if people find my fiction worth reading as my non fiction and 2) Despite only having eighteen months to go before officially retiring, I would like to regain self worth from being able to once again earn money to provide for my family. Watch this space!!

Things which haven’t changed!
I still have problems, at times, grasping things which Pauline or others tell me, requiring them to explain them again, sometimes more than once. I still have problems with time telling and numeracy and I also misread situations or misperceive what I think are people’s responses to me. All these things cause me irritation,  mostly at myself when I fail to understand things, which I have difficulty hiding.

Final thoughts
I wouldn’t want anyone to get the idea that things are a push over, that head injury is something and nothing or that I’m back to normal! I know I was very fortunate compared with many. I was very fortunate in the speed at which I was dealt with and the expertise available to me that day. I am fortunate in having a family like I do and the kind of friends which we have. Much of what I have is based on determination and a positive attitude and this stems from my unswerving faith in God whom I’m convinced had a hand in my life that day since there were too many coincidences for them to be coincidences! Something else which has contributed to my recovery is that, as one of Jehovah’s Witnesses, I am active in our door to door ministry and regular bible study, all of which has not only kept me physically strong but mentally too, making my neural pathways knit that much faster!
Whether to a sufferer or a carer, my final note on this matter is as follows and you’ll find it in the last sentence in my book:

Remember: Where there is life there is hope and there is DEFINITELY life after brain injury.

You can find out more about the book, read reviews or order your copy here

Are we too afraid to listen to disabled people’s desires?

Tuppy Owens, author of Supporting Disabled People with their Sexual Lives, has worked with and supported disabled people for over 35 years. She is the founder of Outsiders, a group providing peer support and dating opportunities for physically and socially disabled people, handles the Sex and Disability Helpline, and set up the Sexual Health and Disability Alliance (SHADA) for health and social care professionals. In this article, Tuppy examines how our attitudes towards the sexuality of disabled people have changed over the years, and shares some success stories she has witnessed as part of her work.

Listening to Disabled People’s Personal Desires, Taking them Seriously, and Supporting them in their Journeys to Fulfillment

The past few decades, it has become increasingly difficult for disabled people to enjoy sexual expression, either alone, with partners or commercially. Back in the old days, things were laiséee faire. Assisted masturbation was often offered by nurses and staff. There was an adventurous, experimental attitude to sex, and no strict regulations about prostitution. I am told a residence in Sussex for wounded World War Two veterans operated brothel-style!Owens_Supporting-Disa_978-1-84905-396-9_colourjpg-print

We now live in an era of transparency and risk assessment; one nurse described it to me as residential homes operating in a liability and blame culture, with loss of person-centred care, of which sexuality is at the heart. Only some health professionals are allowed or prepared to attach sex toys to the genitals of a disabled resident who is unable to pleasure themselves. Nobody has come up with a toy which the individual could activate themselves in the middle of the night without help, but I’m working on it.

Thankfully, more disabled people can go to accessible clubs and bars, and more of them are in work: all places  where they may find a partner. However, today most people use online dating, which is frought with difficulties. Disability dating sites sadly attract preditors and are unsafe to use, unless, like Outsiders, applicants are carefully vetted. Many residences have single rooms and don’t allow bed-hopping or residents to share.

A leading disability publication published an article in the 90’s stating that prostitution is illegal in Britain (which it’s not, and never has been in Britain) and then a false rumour circulated that the 2005 Sexual Offences Act criminalised supporting another person to find a sex worker, saying that it was “procurement”. People who should know better still come up with this nonsense. With that and the over-inflated publicity on trafficking, and threats of criminalising the buying of sex, few health professionals or local authorities will entertain their residents, patients or clients gaining the many benefits of a sex session with a professional.

What else holds health and social care professionals back? My book Supporting Disabled People in their Sexual Lives, published by Jessica Kingsley Publishers on 19th November, looks at the issues in depth, as I have been engaging with disabled people to support them in their various sexual needs for over thirty years, in the Outsiders Club. Basically, as my book says over and over again, our governing bodies do not offer training, guidelines or policies on sex and disability. Myself and Lorna Couldrick, another long term activist, managed to get a short paragraph on the topic on the Royal College of Nursing website this year. SHADA, the Sex and Disability Alliance, which I run, is starting a project to change things around with the governing bodies. But I expect it will be a long battle, especially in the medical arena.

Our laws against discrimination make it illegal NOT to support disabled people to enjoy the same pleasures as others in the privacy of their own homes.

Many disabled people have received worse than useless sex education. Their sexuality so ignored, that their body confidence, sexual confidence and overall sense of wellbeing may be at rock bottom. Some feel their body does not belong to them, as it has only been poked and operated on by doctors. Privacy may have been been denied them. Having been abused, bullied, teased and sexually rejected, they may feel they are on the social scrap heap. They need a great deal of support to climb out of this hole, using body image therapy and sessions to discover what pleasures their bodies are capable of feeling, and to catch up on missed teenage experimentation.

Mat Fraser has workedtuppy blog - mat fraser 1 really hard on himself and his ‘thalidomide arms”, and he’s come a long way. He was photographed naked by Ashley Savage in one of Ashleys’s photo shoots designed to empower the subject and make them look sexy and strong. Mat learned Karate, became a drummer in a rock band and trained as an actor. All these things built up his sexual self confidence. He became the presenter at our fund-raising events, and even did his own striptease act, removing false arms and showing his real ones. He learned to love his own arms. Now he is married to one of New York’s top erotic performers and the two of them starred in “The Beauty and the Beast” which toured Britain this year.22/02/2011 NEWS: The Freak & the Showgirl. Mat Fraser and Julie Atlas Muz Mat has now become a Patron of the Outsiders Trust.

One of our other patrons, Diego Soto-Miranda, severely impaired with spinal atrophy, gave us an excellent tip on how to bring a companion into your life, as a masturbation aide, lover and partner;

Finding a lover/partner is all about maximising circumstance:

  • make them laugh
  • be very polite, and
  • figure out what they want and give it to them.

A wheelchair does not come into the equation. Few say they want someone to climb Everest with them. Usually, they want respect, appreciation, someone to listen, but overall the best aphrodisiac is laughter. Make her/him feel like the centre of the universe.”

Diego worked on his own self confidence to work this one out and put it into practice. He is Brazilian, which might help! In Brazil, flirting and sex are taken seriously. It’s time we started taking such things seriously here.

Tuppy Owens
The Outsiders Trust

Our websites:

www.outsiders.org.uk

www.SHADA.org.uk

www.TLC-trust.org.uk

www.SexualRespect.com

www.AdvocacyProfessional.com

You can find out more about Tuppy’s book here.