RESPONDING TO DISABILITIES IN YOUNG CHILDREN WHILE TEACHING SOCIETAL NORMS AND REQUIREMENTS

Griffiths Matthew

Abstract.
Early years education begins the process of preparing children for their adult lives through the inculcation of social norms. If children with a disability are to have a full role in the adult world, they also need to comply with their society’s social norms. This theoretical paper explores: the tensions between the recognition and valuing of difference and disability and the requirements of compliance with the social norms; how these tensions are manifested in early education systems; suggestions as to how these tensions can be addressed through preservice and in-service training.
The integration of children with disabilities into mainstream education focused on enabling the child to fit into the existing systems. Inclusive education focuses on changing the education systems so that they fit the children. So how far, and in what ways, should children with a disability be required to comply with the behaviour expected of all the other children and frameworks of conformity to social norms
The paper explores how practitioners of modern inclusive education theory can respond to the differences exhibited by young children who are significantly outside the norms for their age, in ways which respond to their differences but do not remove the role of early years education in beginning the teaching of compliance with the social norms
The main results refer to teachers’ uncertainty about reasonable exemption from the norms of age appropriate behaviour; how much latitude is helpful and how much damaging; what can, and should, teachers and other children tolerate; approaches for children whose behaviour is outside reasonable expectations.

Key words: Disability; social norms; expectations.

Introduction
Early years education begins the process of preparing children for their adult lives through the inculcation of social norms. If children with a disability are to have a full role in the adult world, they also need to comply with their society’s social norms.
A social norm. according to McLeod 2008 , is the accepted behaviour that an individual is expected to conform to in a particular group, community, or culture. They are the unwritten usually unconscious, rules about how to behave. They vary between community and community, society and society, culture and culture. Social norms are most noticeable when they are not followed. Very young children learn the expected norms within their family and immediate community, but it is when they enter the education service that they begin to learn the wider social norms that they will be expected to observe as they grow up. Norms provide order in society to the extent that is difficult to see how human society could operate without social norms. Human beings need norms to guide and direct their behaviour, to provide order and predictability in social relationships and to make sense of and understanding of each other’s actions. Early years teachers are instrumental in teaching these norms, although in many cases they are not aware of this. Children learn the rules of being part of a group, of obeying instructions, following routines and showing respect, as well as a myriad of rues which are specific to their society or culture. The inculcation of young children into the social rules and social norms of society is one of the most important roles of early childhood education.
Most of what I really need
To know about how to live
And what to do and how to be
I learned in kindergarten

Aim of the Paper
The aim of this paper is to explore: the tensions between the recognition and valuing of difference and disability and the requirements for beginning the teaching of compliance with the social norms; how these tensions are manifested in early education systems; suggestions as to how these tensions can be addressed to achieve the best outcomes for all our children.

Method.
The research aimed to explore how the modern inclusive education theory in early age education that promotes the concepts of differentiated teaching and learning can respond to the difficulties which some children with disabilities experience in learning and adapting to social norms. Interviews were carried out with the teachers of four children whose disabilities mean that they experience such difficulties. Teachers were asked in semi-structured interviews to give their views on reasonable exemption from the norms of age appropriate behaviour; How much latitude is helpful for the child with a disability; what can, and should, teachers and other children tolerate, and what not; approaches for children whose behaviour is outside reasonable expectations.
The children were:
Jake, aged five years, three months. Jake has Down’s syndrome, severe epilepsy which is moderately well controlled by medication. He attends mainstream provision, where he is much smaller and very much less able than his classmates. He has a full-time support assistant. He finds it difficult to comply with general classroom instructions and his behaviour is more typical of a 2 -3-year-old. His teacher does not know how much she should make him comply with the social norms of the classroom (with the help of his support assistant) and how much he should just be allowed to behave differently,
Rachel aged six years and five months. Rachel has cerebral palsy, resulting in spastic hemiplegia so that the muscles on the right side of her body are in a constant state of contraction. This means she has an awkward gait and writes with her left hand. Rachel has above average intelligence but at home she is allowed to behave in any way that she chooses, is never corrected and so she often refuses to carry out activities in the classroom, interrupts the teacher and other children and becomes aggressive if she does not win in competitive games. Her teacher does not know how much she should make her comply with the social norms of the classroom and how many allowances she should make because of Rachel’s disability.
Edward is six years and one month old. He is hyperactive, runs everywhere, sometimes over furniture and is unwilling to comply with the teacher’s instructions to the class. He sometimes destroys other children’s work. He has a full-time support assistant. His teacher does not know how much she should make him comply with the social norms of the classroom (with the help of his support assistant) and how much he should be allowed to behave differently.
Bobby is six years, 11 months old. He has been diagnosed with Asperger’s syndrome. He is of average intellectual ability. Bobby dislikes any changes in routines; appears to lack empathy;
talks incessantly about dinosaurs (about whom he is may be very knowledgeable); stares at other children; and often avoids taking part in classroom activities. His teacher does not know how much she should make him comply with the social norms of the classroom and how much he should be allowed to behave differently.

Results
The teachers interviewed were all uncertain as to how much they should acknowledge that the children are unlike the others in their class and therefore allow them to be different and not teach them to comply with the behaviour required of all the other children. All those interviewed erred on the side of making far more allowances than they would for other children and none had thought about the long-term impact of the behaviour of children with a disability on their later life opportunities.
Discussion
Even when early years’ teachers are not explicitly aware that they have a major role in teaching social norms, they have an implicit understanding of this major element of their role and are concerned to ensure that all the children in their charge:
• How many allowances should be made for Rachel’s behaviour?
• Should Bobby be stopped from talking about dinosaurs?
• Should Bobby have to take part in activities with other children, even when he resists this?
The two support assistants also had to make decisions about how far they should make Jake and Edward do the things that the other children are required to do:
• Should Jake hang up his coat, even though it is difficult for him and takes longer?
• Should Jake queue up with the other children for lunch and carry his own lunch to the table?
• Should Edward be punished for destroying another child’s drawing or can he not help it?
Conclusion
Far more thought needs to be give in both pre-service and in-service training for early years teachers to the particular requirements for the teaching of social norms to children with disabilities, as the inclusive model of education becomes more and more accepted, particularly in early years education. Discussions should include: reasonable exemption from the norms of age appropriate behaviour, particularly for children like Jake, for whom some form of exemption from a range of social norms will always be necessary, throughout his life.; how much latitude is helpful for children such as Rachel, Edward and Bobby, who have the possibility of leading normal adult lives, if they are not handicapped by inappropriate behaviour; what can, and should, teachers and other children tolerate, and what not; and what approaches should be taken with for children whose behaviour is outside reasonable expectations, so that they can learn to comply with the social norms that will enable them to live happier and more successful lives.
References
Robert Fulghum. All I Really Need to Know I Learned in Kindergarten
McLeod S. Social Roles. Simply Psychology. 2008

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Worth sharing from the blog ‘theviewfromdownhere’:The thoughts and ideas of someone shorter than your average.

I’m Disabled…Hurray!

It’s been over a year since I’ve written a blog. Should I apologise? Has anyone noticed? Does it even matter? Maybe not..! I created this blog because I felt I had something to say about disability, my experience of it and the world that we all live in. It’s been far too long since I last wrote something, and although I don’t feel like I owe anyone an explanation let’s just say, shit happened. Some good things, some hard things but all of them were things that didn’t feel appropriate to write about until the time was right. That time is now!

Full disclosure – this blog post is about the process of applying for the disability living benefit, Personal Independence Payment (PIP), transferring from the older version of Disability Living Allowance (DLA) and the physical and mental damage the process put me through. Spoiler alert: there is a happy ending and I’m so glad to be able to say that I didn’t lose it. The point of this post isn’t to argue my own case but to explain the process to those of you who may have heard the headlines about the number of disabled people deemed ineligible for the benefit and losing their motability cars and money for carers and assistants. I aim to explain what the process was like for me, having to fight for what I needed.

It’s a long one so maybe make a cup of tea before diving in..!

The drama and trauma of having to reapply for my disability benefit was something I knew was going to happen at some point ever since the Government announced it’s plans to change the Disability Living Allowance (DLA) over to Personal Independence Payment (PIP) back in 2012. Since the announcement, I felt a constant niggling sense of unease. My mum had applied for me to receive DLA soon after being diagnosed at two years old so the thought of having to reapply for this, and potentially losing something when I had no idea what life without the support was like, was daunting. The terrifying stories – stories from friends and in the press – of reapplying and losing the support left me feeling like a rabbit in headlights, unsure of which direction to turn and how to ensure I got the result I needed.

As a child, I was given a lifelong award to help with the additional costs that I would incur due to the condition I was born with and the impairments that were never going to disappear. Let’s face it, I was never going to sprout an additional 2 feet and my joints and skeleton were always going to look and function differently to the average Joe on the street.

When Mum applied for me, DLA came in two parts; the first part was for daily living which helped with assistance that you might need with everyday tasks such as dressing, eating, washing etc and the second was for mobility. This financial support could help with paying for adapted clothes and implements a non-disabled person does not require, paying for support needed to get from A to B or paying for mobility aids such as wheelchairs, crutches etc. At the time, it was decided I would receive the lower rate for daily care and the higher rate for mobility.

Fast forward to February 2017. With a thud a one page letter arrives from the Department of Work and Pensions informing me that my DLA will be ending in four weeks’ time and if I would like to, I could reapply for PIP. To do this I would need to call up and request an application form. If I chose not to reapply, the money I currently receive would be stopped and the car that is adapted and paid for with the money I am receiving would need to be returned within six weeks.

My heart literally stopped.

As I said, I knew this was coming so it wasn’t a surprise but I had heard so many terrifying stories of people’s unsuccessful applications. Like someone who had lost both their legs and had not been deemed “disabled enough” to receive the level of PIP that meant they qualified for the motability scheme and lost their car. And countless other stories like this. I was petrified of this happening to me.

To me, the most scary thing about all of this was losing my car. My car is my lifeline. It’s almost equal to my electric wheelchair; it’s my legs and way into the world. It allows me to leave the house and explore. It means I can live my life with as much independence as possible within my own capabilities. It means I can work and be a productive member of society and feel like I have purpose. Without my car everything would be harder or near on impossible. Public transport is just not accessible enough to make it a viable option. In my local area taxis are expensive and the chance of booking a wheelchair accessible taxi on a whim or within school time is zero. My wheelchair doesn’t fit into other people’s cars so the option of catching a lift with a friend or family isn’t an option either. Getting to work on time, buying food supplies, going for a swim or maybe seeing friends are all taken away from me if my car is taken away.

You see why the panic started to set in.

A week later, after having called the number from the letter and confirming I wanted to apply for PIP, my application form arrived in the post. This time there genuinely was a thump as it arrived because the form is HUGE! It’s 40 pages long asking questions that force you to dig deep into the pit of things you’ve buried and decided not to think about and just get on with life. If you’re new to the blog and don’t know me personally, my first post should give you a flavour of what I’m normally about: http://theviewfromdownhere.info/2015/02/09/welcome-to-the-view-from-down-here/ 

Thinking about what I can’t do and what I do differently to everyone else is not condoned by everyday Sam. I currently have quite severe arthritis in both my hips and am moving fairly swiftly towards a full replacement of my right hip. My condition is worsening; I’m in pain every single day and am medicated every wakening hour. That’s the truth but if I’m honest it’s not something I ever say out loud or admit to myself. This form forced me to explain my condition, how it affects me and what the near future will look like. Advice from friends and people I know who had gone through the process already was to go into as much detail as possible. Don’t assume the assessor will read between the lines or have an understanding or knowledge of my condition. With this in mind, in order to avoid doing myself short, I couldn’t shy away from any detail.

How did that make me feel? Honestly? Crushed.

I spent a week writing notes on every aspect of life. Cooking and making food. Washing and bathing. Dressing. Mobility and how I get around. I asked friends and my family to tell me about the things they noticed that I do differently or need support with because I was keen to avoid missing something out. My friends are honestly the best bunch of bloody rockstar girls anyone could ever imagine and threw themselves wholeheartedly into helping me. “Oh Sam, remember you find it hard opening tin cans and need help” “Remember you can’t walk upstairs so when I lived in a flat you had to drag yourself up them and were really tired afterwards” “You can’t reach things that I can” “When you walk you fall over all the time” “You walk slow and it really hurts if you walk too far” “All your clothes need to be adapted” “You can’t reach the shower head” etc etc etc.

After a week of going over all of this and ensuring each of the 40 pages, plus the additional pages of evidence I submitted, were complete, the feeling was not one of relief. My thick skin and hard exterior was cracked and broken. I felt different to my friends, vulnerable and in need of help, someone to be pitied rather than someone with purpose and potential. The form doesn’t ask what you’re good at, what you bring to the lives of those around you or what is good about your life. It asks you about all the hard things, the things that make you different to those who aren’t disabled and asks you to focus on your medical condition.

I cried for a night. Had cuddles with the people I love. Then I pulled myself together, albeit with a few dents and knocks to the armor.

Two months later, I receive a letter informing me I needed to attend a face to face assessment. The bottom of my stomach fell out the other end and I burst into tears.

This isn’t me but this is where the process had taken my mental health to. Between submitting my form over eight weeks ago to the point the letter arrived, I had done a good job of putting the whole thing to the back of my mind. It’s a skill I developed at a very young age when I knew operations and painful things were looming on the horizon; better to try and be in the moment than let worry overtake every waking hour. Good trick but when reality hits, it hits hard!

I’m proactive and practical so I got to putting into action all the advice I had been given from those who had already gone through the process. Make sure you request the permission to record the interview. Inform them you’ll be bringing someone with you. Getting my hands on recording equipment (much, much harder than it sounds) and ensuring I am 200% across everything I wrote on the form and ready to produce more evidence and explanation.

Let me just give you an insight into the shifty business of these face to face assessments. You may have seen the undercover footage on television from face to face assessments where the assessor is clearly lying, making things up or generally making a mockery of the system being fair. I was advised to record the interview myself so that I had evidence should I need to appeal the decision as many many people have had to do so over the last few years. I was informed that this would be possible but I would need to record using apparatus that create two identical copies and these copies would need to be hard copies rather than digital copies. I was not allowed to email a copy of the audio and was not allowed to use two separate recording devices. Think about this, then tell me where I would find such a thing! It doesn’t exist in your local Argos or supermarket. You might be able to buy something as niche as this but it would cost upwards of £400 and definitely wouldn’t arrive within the week in order for me to use at my assessment.

I won’t go into the who, how or where I managed to get my hands on the right equipment as it took a friend of a friend of a friend doing me one hell of a massive favour, but safe to say I was able to record it. This was only possible because I have access to the right people. Is that fair? Is that right? No. Absolutely not. The rules about recording your own assessment are so clearly put in place because the assessors are worried about what might be found and possibly what they would rather hide. It makes you wonder how they’re still able to get away with it.

So at the last minute I get my hands on recording equipment, my mum is coming with me and she’s ready to make notes in case they refuse me recording it. I’ve been awake most of the night, my hips are sore because I’m stressed and didn’t sleep and I’m on the brink of breaking. Luckily, my assessor is a nurse so although she isn’t a specialist in my condition, she at least has medical experience. She’s friendly enough and tries to put me at ease even if she does question my request to record the interview and delays whilst she double checks with Head Office.

The assessment takes almost two hours; the letter stated it would be one. She goes through the form I submitted and asks additional questions to clarify or plump out the evidence that I have written. At the end she does a short physical examination asking me to lift my arms, turn my head, raise my knees etc. I hand over one copy of the recording and leave the building. We get about 20 metres away, Mum asks me how I think it went, I burst into tears, she hugs me and we sob into each other’s shoulders standing outside Milton Keynes Train Station. It’s a new low for me but I simply couldn’t hold it together any longer. I felt like I had gone through an extended shouting match with a loved one: emotionally drained, angry, sad, frustrated and spent. Utterly empty with nothing left to give.

The job of building myself back up began again. Food, drinks, friends, cuddles, a well-timed theatre trip and lots of laughs did the trick. Again, the armour was back on but this time with a few more dents and knocks as unforgettable evidence of what had happened.

The 7th July arrives and post comes through the letterbox. Mum calls to say I’ve received a letter which looks like it might be from the DWP and did I want her to open it. The familiar stomach falling out from under me happens whilst I hear her rustling the envelope and silently reading it to herself. Finally, she eventually says I’ve been successful and received an ongoing enhanced award for both daily living and mobility. She keeps reading, and I don’t hear her. I’m crying big fat tears filled with relief. The heavy weight of dread was lifted from my shoulders and the space in my head that was filled with PIP worry suddenly became empty. I’m not losing my car and I’m actually receiving more support than I was before which reflects the change in my condition.

So it’s a happy ending. I’m receiving more support than before and my car is here to stay but does the end justify the means? The whole point of moving DLA over to PIP is to make savings, help cut the deficit and to stop all those benefit scrounging fake disabled people getting money for something they don’t deserve. I dread to think the amount of money the Government has spent on assessing whether I am disabled, from all the letters they’ve had to pay someone to write, to print and post, the people that have had to ready my evidence, conduct my face to face assessment and assess the report from this, the rent and electricity for the building that the assessment was held in.

Add it all up and it must equate to a small fortune just so they can conclude without doubt that yes, I am in fact, disabled.

But can I put this to you? In that moment, when I received the decision from the DWP, I realised for the last few months I’ve not been disabled by my medical condition I was born with, or by the inaccessible buildings or the attitudes of ignorant people around me. I was disabled by the Government, the process they had constructed and their attitude towards me.

They should be ashamed of themselves.

Holocaust Memorial Day. The Forgotten Massacre

Anna Lehnkering was 19 years old when she was sterilised and  confined to a hospital. She was 24 when a doctor declared her “not useful.” She was gassed.  She had attended a special school, and had difficulty learning to read, write or use numbers.

The Nazis had decided that allowing disabled people to live and have children, led to the “unfit” reproducing more quickly than “the fit”. It was said that this weakened society’s ability to function efficiently, placing an unnecessary toll on non-disabled people.

The Nazis claimed that the social and economic problems that Germany experienced in the 1920s and early 1930s were due in part to the weakening of the population created by an unfair burden.

6c-holocaust-boy-2

Nazi propaganda in the form of posters, news-reels and cinema films portrayed disabled people as “useless eaters” and people who had “lives unworthy of living”. The propaganda stressed the high cost of supporting disabled people, and suggested that there was something unhealthy or even unnatural about society paying for this. One famous Nazi propaganda film, Ich Klage (I Accuse), told the story of a doctor who killed his disabled wife. The film put forward an argument for “mercy killings”. Other propaganda, including poster campaigns, portrayed disabled people as freaks.

After the propaganda came action. On the grounds that disabled people were less worthwhile and an unfair burden on society, a widespread and compulsory sterilisation program took place. This began in 1933, as soon as the Nazis came to power. The Nazi  euthanasia program – code-named T4 – for Germans who were not considered “useful,” such as those who were physically or intellectually disabled, or psychiatric patients deemed unworthy to live

Some 300,000 mentally and physically disabled people were exterminated. Between 1940 and August 1941 alone, more than 70,000 were killed, either gassed, neglected  or given lethal injections

The T4 Program involved  a string of six death camps – called “euthanasia centres” – set up across Germany and Austria. These centres contained gassing installations designed to look like shower stalls Two of the most notorious centres were at Hartheim Castle in Austria and Hadamar Institute, which is near Wiesbaden in Germany. Hadamar had a staff of approximately 100 people. To conceal its real purpose, it also operated as a normal crematorium.

Hitler ordered the suspension of the program in 1941 after opposition from groups within Germany, including Catholic churchmen. However, killings were restarted the following year in a more secretive way, and continued until the end of the war. Hadamar only ceased operation shortly before liberation by American troops in March 1945.. During this latter phase of the T4 Program, death was caused by  an overdose of lethal medication or by starvation.

HIV/AIDS and Disability

Around a quarter of people with HIV are unaware of their infection and at risk of passing on the virus to others through unprotected sex, according to public health officials. The growing relationship between HIV/AIDS and disability is an emerging issue and cause for concern as persons with disabilities are at higher risk of exposure to HIV.

Additionally, there is a growing understanding that persons living with HIV or AIDS are also at risk of becoming disabled on a permanent or episodic basis as a result of their condition.

Like any other person, persons with disabilities require information on HIV/AIDS and access to programmes, services, and resources. In most countries, the situation of persons with disabilities is further compounded by societal barriers that hinder their full and effective participation in society, including access to education. Despite the growing relationship between HIV/AIDS and disability, persons with disabilities have not received sufficient attention within national responses to HIV and AIDS. Furthermore, existing HIV prevention, treatment, care and support programmes generally fail to meet their specific needs. Persons with disabilities are often excluded from HIV education, prevention and support services because of assumptions that they are not sexually active or do not engage in other risk behaviours such as drug use.

Sexual and reproductive health service providers may lack knowledge about disability issues, or have misinformed or stigmatizing attitudes towards person with disabilities. Services offered at clinics, hospitals and in other locations may be physically inaccessible, lack sign language facilities or fail to provide information in alternative formats such as Braille, audio or plain language.  In places where there is limited access to medication, persons with disabilities may be considered a low priority for treatment.

Women and girls with disabilities are especially vulnerable to sexual assault or abuse.  Persons with intellectual impairments and those in specialized institutions are also at particularly high risk. Around the world, children with disabilities are a large proportion of the children and persons with disabilities not enrolled in school, which results in their exclusion from vital sexual and reproductive health education that is often provided in school settings. Low literacy levels and a lack of HIV prevention information in accessible formats, such as  Braille make it all the more difficult for persons with disabilities to acquire the knowledge they need to protect themselves from being infected.

report  by Public Health England, in advance of National HIV Testing Week, shows there are now nearly 110,000 people living with HIV in the UK – demonstrating the continuing transmission of a disease once viewed as a virtual death sentence into a manageable long-term condition.

But it warned that around a quarter of these, 26,100, are unaware of their infection and at risk of passing on the virus.

“We can’t overstate the importance of testing for HIV to ensure an early diagnosis”

Valerie Delpech

However, it noted “encouragingly” that the proportion of people diagnosed with a late stage of HIV infection fell from 57% in 2004 to 42% in 2013.

The report shows around 6% of gay and bisexual men are now living with HIV, rising to 13% in London – with 3,250 newly diagnosed in 2013, an all-time annual high.

It is estimated that over 7,000 gay men have an HIV infection that remains undiagnosed and that an estimated 2,800 men acquired HIV in 2013.

The figures underline the need to further increase both the numbers and frequency of HIV tests, which is critical to tackling the ongoing high levels of HIV transmission, said the report.

While the large majority of black Africans do not have the HIV infection, the report also highlighted the fact that one-third of the 40,000 black African heterosexual men and women living with HIV in the UK do not know they have HIV.

“There is a dangerous complacency in our society about the challenge of HIV”

Deborah Gold

Dr Valerie Delpech, head of PHE ‘s national HIV surveillance, said: “We can’t overstate the importance of testing for HIV to ensure an early diagnosis.

“In 2013, people diagnosed with HIV late were 10 times more likely to die in the first year of diagnosis, compared to those diagnosed promptly. People who remain unaware of their infection are also at risk of transmitting HIV to others,” she said.

“Knowing one’s HIV status is the key to both effective treatment, and to preventing onward transmission. This is why we are promoting the National HIV Testing Week,” she added

Deborah Gold, chief executive of the National AIDS Trust, said: “Whilst we have passed the 100,000 mark for the number of people living with HIV in the UK, there is a dangerous complacency in our society about the challenge of HIV.

“The high rates of undiagnosed HIV are unacceptable but we are failing across the NHS and in the community consistently to offer HIV tests to those who need them, especially heterosexual men and women,” she said.

Progress is possible but there is still an immense amount to do to get everyone with HIV diagnosed in good time and meet the UN 90-90-90 target of just 10% undiagnosed,” she added.

 

People with learning disabilities and forced marriage

British councils have had to create policies to tackle the rise in the number of people with learning disabilities entering forced marriages. They issue guidance for social workers and other staff to raise awareness and spot potential victims. It is unlawful in the UK to give permission for a marriage on behalf of a person if they cannot consent themselves. The Forced Marriage Unit says it is dealing with a “growing number of referrals” involving people with learning disabilities and has produced a booklet to help professionals prevent forced marriages.

A forced marriage in UK law, is one to which the individual has not consented. For people with learning disabilities this may mean that they do not have the capacity to consent to marriage or that they do not understand the nature of the marriage contract. It does not necessarily imply force, coercion or intimidation. In fact the person with learning disabilities may be happy to comply, and enjoy the idea of a wedding or of being married, although they do not fully realise what they are agreeing to, or they may not understand what is happening at all.
The majority of cases of forced marriage reported to date in the UK involve South Asian families; this is partly a reflection of the fact that there is a large, established, South Asian population in the UK. However, it is clear that forced marriage is not solely a South Asian issue and there have been cases involving East Asian, Middle Eastern, European, Gypsy and Traveller and African communities. Some forced marriages take place in the UK, while others involve a partner coming from overseas or a British national being sent abroad.
In 2009 nearly 1,700 incidents of suspected forced marriage were reported to the Forced Marriage Unit. Research also indicates that the forced marriage of children and adults with learning disabilities is likely to be vastly underreported and can differ from the way in which forced marriage presents generally. It is therefore difficult to obtain any figures for the number of people with learning disabilities who are forced to marry.
Many families are not aware that organising marriages for their relative with learning disabilities could potentially be forcing them into marriage. Parents who force their children to marry often justify their action as protecting their children, building stronger family ties and preserving traditions. They often do not see anything wrong in their actions and indeed when this involves a person with a learning disability they often believe it is the right, or only, option and therefore may be open about their intentions. In addition to the motives for forcing people to marry generally, there are other factors which may make someone with a learning disability more vulnerable. For example a lack of suitable day centres and day time activities may isolate a potential victim. Some key motives for forcing people with learning disabilities to marry include:
• Obtaining a carer for the person with a learning disability.
• Obtaining physical assistance for ageing parents.
• Obtaining financial security for the person with a learning disability.
• Believing the marriage will somehow “cure” the disability.
• A belief that marriage is a “rite of passage” for all young people.
• Mistrust of the “system”, mistrust of external (e.g. social care/health) carers.
• A fear that younger siblings may be seen as undesirable if older sons or daughter are not already married.
• The marriage being seen as the only option or the right option (or both) – no alternative.

Anecdotal evidence also suggests that young women with learning disabilities can be married to young men who have in some way “disgraced” family honour and are now regarded as “unsuitable” to enter any other marriage. Marriage with a woman with a learning disability may be seen by the family as their only option. Some prospective brides and grooms who come from abroad may not realise that they are marrying a person with a learning disability and that they may be expected to become a carer.

A booklet for people with learning disabilities  has been produced by Respond with funding from the Forced Marriage Unit.

Should disability be grounds for abortion?

On March 26, North Dakota became the first US state to prohibit abortions after detection of “either a genetic abnormality or a potential for a genetic abnormality,” with this defined as “any defect, disease or disorder that is inherited genetically”. Down’s syndrome is specifically cited in House Bill 1305.

baby 2

Some disability advocates have hailed the law as a step forward to create a better society for individuals with disabilities. As Mark Leach, a lawyer and parent of a child with Down’s syndrome, writes, banning the discrimination of a child with disabilities even before she or he is born is an example of how “public policy starts with the statement that discrimination is prohibited and then states enact policies to create a society where discrimination is no longer a barrier.”
A result of passing such laws could indeed be “to increase the number of advocates for … social supports” – for education and other support services for individuals with disabilities, he argues.
Knowing that society is not a place where individuals with disabilities are fully supported and integrated is why many women have terminated their pregnancies when they learn that their child has Down’s syndrome,

Alison Piepmeier, whose 4-year-old daughter, Maybelle, has Down’s syndrome, is writing a book on prenatal testing and reproductive decision-making. In a preview in the New York Times, she shares that the many women she has spoken to all emphasized that “abortion was an incredibly painful decision,” but one they chose in no small part because “they recognized that the world is a difficult place for people with intellectual disabilities”.

As parents of children with Down’s syndrome, Becker, Leach and Piepmeier have all been
confronted with the news that their baby had genetic abnormalities and chosen to go ahead with the birth.

disabled baby 1

However, the mother of another severely disabled child reportedly said she would rather have aborted her child than face the life they had after her baby was born.
Joanne Chinnock claimed £500,000 compensation because she says doctors didn’t warn her that she had a chance of her baby being born handicapped. Her daughter, Bethany Chinnock-Schumann, was born with an extremely rare chromosomal disorder which left her nearly blind and in almost constant pain. She died aged 11. They want compensation for the damage done to their lives, their careers and the cost of raising their child.
Another mother, Hilary Freeman, says she had an abortion on doctor’s advice and thinks that a life of suffering is no life at all for a child. She has no regrets about her decision. Hilary had an 8-week scan at her first pregnancy which showed the embryo wasn’t developing properly. A later scan at 24 weeks showed the child, a girl, had a very rare condition which would have given her all kinds of physical and mental disabilities, and she would have been in pain – if she’d survived.
Hilary sought as much advice as she could about the diagnosis, an agonising situation knowing she very much wanted the baby she could already feel kicking. .She decided to terminate the pregnancy, and has no regrets, but says she doesn’t believe all disabled children should be aborted – she thinks it depends on the condition involved and quality of life the child would have. She would not want any child to suffer as hers would have.

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But should it be possible for a woman to make such a decision? Is it discrimination? Will the North Dakota legislation challenge discrimination or will it condemn some children to lives of suffering?

What is the legislation in your country?

How would you make such a decision, if you could make it?

Do you have a view about how such a decision could have been made about you?

Assisted Dying: a merciful release or legalised murder?

What are your views? Are there different issues for people with disabilities?

Many people in the UK advocate a change in the law on assisted dying. They believe that, subject to strict upfront safeguards, the law should allow terminally ill, mentally competent adults to request life-ending medication from a doctor. The dying patient would then have the choice to self-administer that medication at a time that was right for them.
It is believed that the change in the law on assisted dying would not lead to more deaths, rather it would lead to less suffering for those dying people who want the choice to control how and when they die.
This change is reflected in Lord Falconer’s Assisted Dying Bill which had its First Reading in the upper house of the UK parliament, the House of Lords on 5 June 2014. The principles of the Bill will be debated, and possibility voted on, for the first time when the Bill receives its Second Reading on Friday 18 July.

A recent YouGov poll found 73% of adults in England and Wales support the proposals in this Bill.

Summary of the Assisted Dying Bill
The Assisted Dying Bill is a specific, focused piece of legislation based on a recognition – repeatedly expressed by the courts – that the issue is one for Parliament to address. A change in the law that every opinion poll has shown is supported by an overwhelming majority of the public.

You can view the Bill in full and track its progress on Parliament’s website here.
If enacted it would:
• Result in fewer dying adults – and their families – facing unnecessary suffering at the end of their lives, subject to strict upfront safeguards, as assessed by two doctors.
• Bring clarity to an area of the law that is currently opaque and thereby provide safety and security for the terminally ill and for medical professionals.
• Neither legalise voluntary euthanasia, where a doctor directly administers life-ending medication nor act as a slippery slope to do so.
• Protects anyone who doesn’t have a terminal illness, including elderly and disabled people, by not in any way affecting the law that makes it a criminal offence to assist ending their lives.
• Above all it will give dying adults peace of mind that the choice of assisted dying is available if their suffering becomes too great for them in their final months of life.
• Without a change in the law, terminally ill patients will continue to take decisions without adequate safeguards, whether by travelling to Dignitas, in Switzerland, to die, ending their lives themselves or being illegally helped to die by doctors.

Impact of the Assisted Dying Bill
The Bill draws on the experience of Oregon’s Death with Dignity Act. This law has been in force for 17 years and has enabled a small number of people who were terminally ill to request the choice of an assisted death. In practice only a very small number of patients have an assisted death – less than 80 in total in 2013 out of the annual 30,000 deaths in Oregon. There has been no evidence of abuse since its inception.
The Assisted Dying Bill would:
• Provide safeguarded choice and control to terminally ill adults and prevent prolonged suffering among these dying adults who want to have choice over how and when they die.
• Ensure that terminally ill adults who have assistance to die do so having met clear pre-determined criteria and have explored all their alternatives; rather than as at present, in secret, when checks are only made after someone dies (as set out in the prosecuting policy on assisted suicide).

The Assisted Dying Bill would not:
• Legalise assisted suicide for people who are not dying (for example disabled people or older people).
• Legalise voluntary euthanasia where a doctor administers the life-ending medication. Under the Assisted Dying Bill the person choosing an assistance to die would self-administer the prescribed life-ending medication.
• Legalise a system where the person being directly helped to die is no longer competent to make that choice for themselves. This Assisted Dying Bill would only apply to adults with mental capacity both at the time of their request and at the time of their death.

How should we protect children with disabilities from being marginalised, excluded or bullied at school?

How should we protect children with disabilities from being marginalised, excluded or bullied at school? Inclusive education has the possibility of opening many doors that were previously closed but children with disabilities may have a significantly less enjoyable experience of schooling than many of their peers

According to researchers, children with special needs often have a lower social standing among the other students in the classroom which may lead to them so frequently becoming the targets of bullying. For children with special needs, and their parents, this present unique challenges that can, at times, overwhelm. “Many parents have a hard enough time dealing with the day-to-day challenges of life with a special needs child. Add bullying into the mix and everybody is just completely overwhelmed,” said one parent.

Research conducted has demonstrated conclusively that children with disabilities are significantly more likely than their peers to be the victims of bullying. A study in the British Journal of Learning Support (2008) found that 60 percent of students with disabilities reported being bullied compared to 25% of the general student population. According to researchers Wall, Wheaton and Zuver (2009) only 10 studies have been conducted in the United States on bullying and developmental disabilities. All studies found that children with disabilities were 2 to 3 times more likely to be victims of bullying than their non-disabled peers. In addition, the researchers found that the bullying experienced by these children was more chronic in nature and was most often directly related to their disability

Many classmates choose to not be friends with these children, thus leaving them purposely out of the social fabric in the classroom. Simply stated, students with disabilities stand out by virtue of behavioural, vocal or physical challenges

Overall, researchers have concluded that children with special needs are bullied more because:

• They may have a low frustration tolerance. When frustration increases and reaches a threshold, it can lead to a meltdown, which makes the person stand out as being different.

• Students with developmental disabilities may have difficulty paying attention to more than one piece of information, which may cause them to stay “stuck” in a conversation. Such actions can have adverse effects on their social skills and make it difficult for them to hold conversations and make friends. They may also have different interest, because of their level of cognitive development, from their peers

• children with autism and Asperger’s syndrome have higher rates of peer rejection and higher frequencies of verbal and physical attacks because of difficulties with social interaction and the inability to read social cues. They are also more likely to be thought of as odd, abnormal and even dangerous

• Children with a degree of motor difficulty have difficulty reading, writing and participating in games. As such, they are often made fun of on the playground and in class because they are unable to perform age-appropriate motor skills, such as kicking a ball to the right person or colouring in the lines. Students with physical impairments may move slower, have less stamina and an unsteady gait. These conditions, as well as others, may be viewed as signs of weakness and precipitate physical or verbal abuse. Children with cerebral palsy may dribble or eat in a messier way than their peers which may result I their being ostracised.

• Children with communication disabilities sometimes have assistive technology devices that other students do not understand and, as such, the other students view them as “weird.” Conversation with them can be slow and onerous and so there are increasingly marginalised.
In a study conducted in 1994, researchers found that children with visible physical conditions or disabilities, such as cerebral palsy and Down’s syndrome, are more likely to be called names or aggressively excluded from social activities. Other researchers have discovered that students with disabilities were more worried about school safety and being injured or harassed by peers, compared to students without a disability. In 2009, the Massachusetts Advocates for Children in a survey of nearly 400 parents of children with autism across the state found that 88 percent of children with autism have been bullied at school ranging from verbal abuse to physical contact.
In Connecticut, Julie Swanson, an advocate for families with special needs and her colleague, Jennifer Laviano an attorney in private practice who represents children and families with special needs, joined forces with other parents to persuade the State Department of Education, to begin to track the number of incidents of bullying and the child with special needs. Julie stated that while there is no “official” data being kept on the incidence of bullying among kids with disabilities, the incoming call data reflected a disturbing trend: more than 50 percent of the complaints involved a student with an IEP, or a disability. The unofficial conclusion is that there is a disturbing, disproportionate occurrence of bullying among students with disabilities.

“This is the exact type of data I attempted to identify as an unmet need in special education in my involvement of the State Advisory Council,” said Swanson. “However, the state did not recognize this as an unmet need that warranted money allocated to officially track the incidence among kids with disabilities.”

Special education programs and inclusion efforts have opened doors for thousands of children with special needs. Yet, those very doors may have also made them vulnerable to bullying. Special classes, extra help and visible assistance given to such students makes them different from other students. As a result, other students too often characterize children with special needs as not smart or too different to be included. Jerome J. Holzbauer reported occurrences of harassment of students with disabilities witnessed from 90 special education teachers in a large public school district. Overall, 96.7 percent of the teacher reported that they observed more than one incident of school-related disability harassment conduct.
“I have a 10-year-old daughter with cerebral palsy, said the father of a child with special needs. “Several days ago, I walked into my daughter’s school cafeteria unannounced. The ‘normal’ kids were throwing food at the children with special needs.”

So what can be done?
Do organisations which deal with bullying make provision for children with special needs?
What was your experience, or your child’s experience of school?
Have any schools or colleges found a strategy which works to minimise bullying and increase integration?
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Integrated or patronised?

There’s no doubt that Oliver had a great time and that his dad loves him,  but is this real achievement or sentimental tokenism.

This was published by the Down’s Association on Facebook today What’s your view?

Oliver’s Sports Day 2014 – Dad Mathew writes:
‘Oliver set off in the wrong direction, then unconventionally for a sprint he had a sit down, then with some coercion, he continued at a plod, roared on by the entire school and cheered and clapped by all the parents as they willed him to the finish line. He triumphantly turned to the wild supporters and punched the air with a roar! There was barely a dry eye on the field! Last place by about 5 minutes but a heroic effort to match Eric the Eel and loving it!
Great effort son! Love you xxxx’

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