1st September, 2011
19th June, 2011
This is a guest post by Sarah of Same Difference
Earlier this week, BBC Radio 4’s In Touch ran a programme called Visually Impaired British Asians.
The programme looked at the specific issues affecting British Asians with visual impairments. Research has suggested that South Asians are more likely to have several eye diseases than the general population. However, expectations among their community about what they are able to do are limited.
The programme raised the very important point that awareness of sight loss related diseases needs to be raised among British Asians in order to prevent them. The importance of eye tests was also emphasised.
For several reasons, British Asians may be missing out on support that is available to people with visual impairments. The programme looked at some of these reasons. For example, many older Asians in Britain are unable to speak or read English.
As part of the programme, presenter Peter White spoke to a South Asian adviser for the RNIB, who speaks to patients in their own languages. She raised the point that older British Asians are used to natural, holistic remedies for health problems and may find medical solutions, such as laser surgery, too extreme.
Peter White also spoke to a South Asian social worker who is registered blind herself. She now has her own organisation helping other South Asian people with sight loss. She recalled the case of one woman who could not believe that blind people could leave their houses! This woman, herself, had not been allowed, by her husband, to leave her house. The point was raised that for cultural reasons, South Asians think that if people with sight loss leave home alone, they are not being looked after and protected well enough by the family.
Finally, the point was raised that organisations need to be sensitive to the cultural needs of South Asians.
I found the programme very interesting and very educational. I believe that this is a programme that all British Asians of all ages really need to hear. If you agree, please click this link to listen to it on BBC iPlayer.
30th May, 2011
Recently the Conservative MP Philip Davies argued that disabled people should be allowed to work for less than the minimum wage, as they face greater barriers to employment:
The people who are most disadvantaged by the national minimum wage are the most vulnerable in society. My concern about it is it prevents those people from being given the opportunity to get the first rung on the employment ladder.
Given that some of those people with a learning disability clearly, by definition, can’t be as productive in their work as somebody who hasn’t got a disability of that nature, then it was inevitable that given that the employer was going to have to pay them both the same, they were going to take on the person who was going to be more productive, less of a risk, and that was doing those people a huge disservice.”
Some of what he said was very insulting, especially the bit about people with a learning difficulty being inherently more inefficient then those without (given that many people with conditions such as dyslexia are highly productive), and he has been heavily and rightly criticised for it. He is also wrong to focus on the national minimum wage, and his plan would create a two tier system within a firm.
Mr. Davies was right in several ways however; that many employers are unwilling to take on people with visible/severe disabilities because of the perceived extra cost and hassle. And he is right too to argue that merely saying that it is illegal to discriminate doesn’t stop employers turning down applicants for this reason. After all, if there are thirty applicants for a job, nobody notices if an employer turns down the one with a disability.
Clearly attitudes need to change. But in the meantime, there is a way to make some disabled applicants more attractive to employers. Some people with disabilities do need their employers to make ‘reasonable adjustments’ to their workplace, such as hearing loops. Since this is a requirement under the Disability Discrimination Act (1995), many employers aren’t willing to take them on because of the extra cost.
This is where Access to Work comes in. This is a little known, but very useful scheme which refunds employers for the purchase of disability related equipment. A recent DWP report estimated its spending return:
Medium term, greater investment is needed in Access to Work, as it reaps net benefits to the Exchequer – an estimated return to the Treasury of £1.48 for every £1 invested, with even higher returns to society overall (including improved health and well-being).
The benefits include keeping people in work who would otherwise be claiming out of work benefits. Yet because Access to Work is mostly unknown, employers aren’t able to take advantage of it. Educating employers about Access to Work would have a greater impact than worrying about lowing the minimum wage for disabled workers.
25th May, 2011
Professor Steve Jones, a highly respected geneticist, has warned about the dangers of inbreeding. Using Bradford as an example, he pointed out that 75% of Pakistanis in Bradford marry their cousins:
‘There may be some evidence that cousins marrying one another can be harmful,’ he told an audience at the Hay Festival.
‘We should be concerned about that as there can be a lot of hidden genetic damage. Children are much more likely to get two copies of a damaged gene. ‘Bradford is very inbred. There is a huge amount of cousins marrying each other there.’
The problem occurs not as a result of a one off marriage between cousins, but rather through persistent inbreeding.
He was criticised by Mohammed Shafiq of the Ramadhan Foundation:
‘I know many Muslims who have married their cousins and none of them have had a problem with their children. ‘Obviously, we don’t want any children to be born disabled who don’t need to be born disabled, so I would advise genetic screening before first cousins marry.
‘But I find Steve Jones’s comments unworthy of a professor. Using language like “inbreeding” to describe cousins marrying is completely inappropriate and further demonises Muslims.’
8th March, 2011
This is a guest post by Sarah of Same Difference
I read a heartbreaking story yesterday. There are plans to deport a five year old girl back to Algeria. And Rania Abdechakour has severe disabilities- quadriplegic Cerebral Palsy, epilepsy, heart problems and partial eyesight.
Rania was sent to the UK on a six month visa in 2008 to live with her aunt and uncle and receive medical treatment. Her stay was then extended so that her medical treatment could continue. Now, she is making good progress, and even attending a mainstream school.
However, an application for permanent leave to remain in the UK has been rejected. The Home Office says that Rania must return to Algeria. Her family say that there is no chance of her receiving appropriate medical treatment there. And epilepsy, says her aunt, Jo Taleb, is still seen as possession in Algeria. They fear that if she is deported, she faces death.
So the family are appealing the Home Office decision. They have set up a petition to the Home Secretary and a Facebook group called Rania Must Stay.
I hope you’ll agree that this campaign needs as much publicity as possible.
6th February, 2011
Much of the debate on welfare reform has centred around the introduction of the Universal Credit, which will hopefully reduce some of the byzantine complexity of the currently system (if it works) by merging a number of benefits into one. While this plan has been understandably praised, there are a number of bad measures currently under consideration as the Welfare Reform Bill reaches its second reading. Benefits activist Sue Marsh summarises the three key proposals which should be stopped or reformed:
1) Removing Disability Living Allowance mobility payments from adults in residential care.
An adult who needs to live in residential care will have extensive needs and are often amongst the most severely disabled. The mobility component of DLA afforded them their only freedom, allowing them to choose to fund a power wheelchair otherwise unavailable on the NHS, or to pay for taxis or transport to get out now and then. Taking this away would leave the most vulnerable disabled people effectively housebound. There is no support for this change anywhere – charities, independent benefit reports and even the government’s own advisers have called for this to be removed from the bill
2) Scrapping DLA entirely and replacing it with Personal Independent Payments (PIPs).
DLA is a very effective benefit with fraud rates of less than 1% (DWP own figures) It is already incredibly hard to claim and the qualification criteria are very narrow. The government have announced that DLA claimants will also soon face assessment and that the overall number of claimants will be reduced by at least 20%. The government’s own advisory committee concluded that they could find no justification for this reform and have asked for clarification from the government. If a benefit is already very efficient, yet a government announce a 20% cull before a single assessment has even taken place, we conclude it can only be a cost cutting measure that will ignore genuine need.
2nd February, 2011
This is a guest post by Sarah. She blogs here.
This is one of the strangest cases I’ve heard of since I started blogging. It seems to be not so much surprise that a disabled person knows what sex is, but a feeling that he doesn’t understand what sex means.
A 41 year old man, known only as Alan, has been banned from having sex because he has an IQ of 48 and a ‘moderate’ learning disability. Alan started a romantic relationship with another man, Kieron, who he met while living in a home provided by his local council. However, in June 2009, Alan’s local town hall decided that he lacked the mental capacity to have contact with Kieron, and began court proceedings to restrict their contact with each other. Since then, Alan has been closely supervised to prevent him from carrying out any further sexual activity, except when he is alone in his bedroom.
This is the latest case to be brought before the Court of Protection, which has the power, under the Mental Capacity Act 2005, to make life or death decisions for people who lack the intelligence to make them for themselves. Usually, this court can force people to have abortions or life saving surgery, use contraception or switch off life support machines.
1st February, 2011
The coalition is to invest more money in provision for tackling mental health issues, particularly amongst children and teenagers:
It is widely acknowledged that there have been significant improvements in adult services over the past decade, particularly in relation to the support available in the community. In contrast, the network of child and adolescent mental health services – funded jointly by the NHS and local government – have been criticised for having long waiting lists and patchy provision of services.
The problems have led to children being treated by adult services in places. The transition from child to adult care during the teenage years is also considered inadequate. The government’s strategy, which is being backed by an extra £400m of funding by 2014, will aim to boost psychological therapies, such as counselling.
This is good news, as those with mental health issues don’t often have the access to the right treatment. One only has to look at the prison population, which contains many individuals with mental health issues who should be in a secure hospital receiving treatment rather than being locked up behind bars.
26th January, 2011
Bangladesh, which is co-hosting the 2011 cricket world cup, is planning to pay around 300 disabled beggars in the city of Chittagong to stay off the streets for the next three months:
Some 300 disabled beggars would be paid about $2 (£1.20) a day for three months to compensate them for their loss of earning, Mayor Mansur Alam said. He added that the beggars would also be given a chance to move into rehabilitation centres…
The decision comes days after the government proposed to move all the beggars in the capital Dhaka to welfare centres until the World Cup was over.
The only positives in this is that the beggars may receive a steady if small income (though some of that is likely to be stolen in the distribution), as well as the possibility of accommodation. Other than that, there is nothing to recommend this scheme. It amounts to a form of cleansing, where undesirables are herded into centres and held so as not to disturb the eyes of visitors. Many of these individuals are presumably unable to work due to injuries and thus unable to pay for accommodation and food, and it would be better if they could be provided with long term care and support. Whilst that is not always possible in a poor if developing country, any sort of support must be better than this.
(Hat-tip: Sarah at Same Difference)
13th January, 2011
Sky pundit Andy Gray, already under pressure following his sexist comments about a female assistant referee and women in general, has been sacked by Sky after new footage emerged of a previous incident where he made sexually suggestive comments to another presenter. Given that his views and behaviour are fairly typical, he was unlucky in that he got caught, with others who have no doubt said similar things now distancing themselves from him. The search for his replacement is underway, and who is in the running (though not the favourite) to fill his shoes, but Glenn Hoddle, who had this to say about disabled people when England manager:
“You and I have been physically given two hands and two legs and half-decent brains,” he was quoted as saying. “Some people have not been born like that for a reason. The karma is working from another lifetime.” I have nothing to hide about that. It is not only people with disabilities. What you sow, you have to reap.”
12th January, 2011
This is a guest post by Sarah. She blogs here.
Like most loving mothers, Penny Jarvis says she wants the best for her daughter, MacKenzie, 2. However, when you read their story, you would be forgiven for thinking her methods of achieving what she believes to be best for her daughter are more than a little unusual.
MacKenzie was born with Turner Syndrome, a rare chromosome abnormality affecting females, that causes restricted growth, heart and kidney problems, bone disorders, hearing loss, ear problems and infertility. MacKenzie will be unable to conceive her own child naturally- but she could carry a child created from a donated egg.
So Penny, 25, wants to freeze her own eggs now, so that MacKenzie will be able to use them for an IVF pregnancy in later life. According to the Human Fertilisation and Embryology Authority, the procedure is allowed in this country, though a spokesman for the organisation also told the BBC that it would be very important for both mother and daughter to be given appropriate counselling if they chose to carry out a pregnancy.
23rd December, 2010
I was pleased to see that CNN-IBN, an Indian media network, has awarded Dr. Mitu Khurana one of its Citizen Journalist awards. The prize, which recognises ‘ordinary’ (i.e. those who are not journalists) Indians who have exposed or campaigned for something, such as a disabled passenger who secretly filmed people refusing to get up from the disabled seats for him. Dr. Mitu’s citation reads:
Citizen Journalist, Dr. Mitu Khurana, is a Delhi based pediatrician. She is the first woman to have filed a case under the PC-PNDT act against her husband and in laws. She also filed a case against a Delhi based hospital and the doctor who did an ultra sound on her to determine the sex of her twins fetuses. Mitu’s in-laws who wanted her to undergo an abortion tortured, her. She endured the abuse and harassment. She gave premature birth to twin girls. Her ordeal didn’t end there. Mitu’s attempts over 3 years to get her husband to accept the girls failed. Instead, she was thrown out of the house, so that her husband could marry again. Mitu is now trying to fight the case under the PCPNDT Act that clearly states that hospital and doctors should neither conduct sex determination tests nor disclose the sex of the fetuses. She turned CJ to create awareness about the Pre conception and Pre Natal Diagnostic Techniques (Prohibition of Sex selection¬) Act that bans sex determination tests in India.
We have been following her case for some time on Pickled Politics (see here, here and here). Dr. Mitu is now engaged in a custody battle with her ex-husband, who is using the threat of losing her daughters as a way to pressure her into dropping the case against him, his relatives and the official bodies. She has been repeatedly maligned by the previous judge, other officials and her former in-laws, so it is heartening to see that this brave woman, who is challenging the culture of aborting female babies en masse, is receiving more recognition.
15th December, 2010
This is a cross-post by Sarah.
The case of Lubna Qazi has got me thinking. Mrs Qazi, 53, admitted falsely claiming Carer’s Allowance of up to £18,000 while working as a DJ for BBC Asian Network in Birmingham.
She began claiming the benefit in 2002 after her husband had a stroke. She started work at BBC Asian Network in early 2003- but for 7 years, she did not declare her job as a DJ to the DWP. She was earning more than the £95 a week allowed for people claiming Carer’s Allowance.
I am usually the last person to agree with benefit fraud. If Mrs Qazi had never been a carer and had claimed Carer’s Allowance, or if she had continued to claim the benefit after her husband had been cured of his health problems, I would have been the first person to strongly dislike her for this.
However, Mrs Qazi was genuinely her husband’s sole carer during the 7 years- a fact recognised by Birmingham Crown Court and the reason why she received a conditional discharge rather than a three month jail term. She has also been ordered to pay £100 legal costs and to return over £17,000 to the DWP.
9th December, 2010
The government is planning to abolish the Independent Living Fund by 2015. The fund, which spends £398 million helping 21,000 severely disabled people fund carers has been closed for new claimants and will vanish entirely in 2015. The government claims that local authorities will still have to provide care for the people who have lost out, but there is several problems with this approach.
At present, the Independent Living Fund is used to provide carers to the severely disabled in their homes, at a cost of around £300 a week per person. This is so they can remain in their own homes rather than having to go into care homes. If the Independent Living Fund is abolished then it is more likely that the severely disabled will have to go into care homes. However dedicated the care staff are in a care home, the majority of people will always be better off living in their home and thus will be happier. On the cost side too, it is unclear whether the fund will produce a saving, as the costs of running a care home are high.
I think that the state should focus on helping the weakest and most vulnerable in society. It should help them, if possible, in a way that most suits them, which the Independent Living Fund does, but paying for their care without them having to sacrifice their surroundings and independence. It is wrong that a state can find millions to spend on researching happiness, or hiring ‘Senior Media Officers’ for Sport England while reducing support for the most vulnerable in society. While it is true that cuts need to be made thanks to Labour’s destruction of the public finances, the cuts should hit where the state is at its most bloated and unnecessary, rather than at key areas like this.
2nd December, 2010
It was good to see that a man who repeatedly kicked his girlfriend in the head has been jailed for four years by the Court of Appeal, which overturned his original suspended sentence:
[Matthias] Dawson was given a 12-month suspended sentence in August after admitting GBH with intent at Inner London Crown Court. The appeal against the sentence was brought by the Attorney General, Dominic Grieve QC – the first time he has taken such action since taking office in May.
Kenneth Clarke, the Justice Minister, is right to be looking at reducing the number of people in prison. It is unclear how locking up large numbers of non-violent offenders (especially drug users) benefits society as a whole (though there are some non-violent crimes which deserve such sentences), especially given the high re-offending rates. For crimes such as violent assault though, prison should always be the outcome, as such people need to be locked up to protect others from them. It is unclear what the point of a suspended sentence is in this case. Nor was this an isolated incident. Three teenagers tortured an autistic boy for days and received only community orders and suspended sentences in October:
The gang used a mobile phone to film themselves carrying out depraved assaults on their 17-year-old victim. During a sickening spree of violence the three thugs kicked and stamped on his head, repeatedly punched him in the chest, beat him with a tennis racket and then threw him down a steep embankment.
The terrified teenager – who suffers from Asperger’s syndrome, a form of autism – was also pelted with dog mess, had his limbs scratched with sandpaper and was forced to drink vodka and gin until he passed out.
Mobile phone footage showed the yobs laughing and joking as they made him endure other abuse and, in a final humiliating assault, they applied adhesive tape to his genital area before ripping the tape off.
1st December, 2010
This is a cross post by Sarah Ismail
Earlier this year, PhD student Julia Smith published a study that raises a very interesting issue. She interviewed 12 women aged 18-65 with physical disabilities who also have mental health issues, in an attempt to find out whether mental health services in the UK currently meet the needs of users who also have physical disabilities.
The results were summarised for the guest column of the most recent issue of Disability Now magazine.
The issue is one I had not thought about before, but after reading this article I realise that it is an important one that deserves and needs more detailed study.
23rd August, 2010
The Association of Chief Police Officers (Acpo) has reported rise in hate crimes in Britain:
Yesterday’s figures show that the levels of hate crime in Britain are worse than were previously thought. The 52,028 incidents recorded by police forces in England and Wales in 2009 is a 12 per cent increase on the 46,300 said to have occurred in 2008. In 2009 there were 43,426 race-related hate crimes recorded by police forces in England and Wales. This is a 10 per cent increase on the 39,300 estimated to have taken place in 2008. Crimes committed due to the victim’s sexuality increased by 12 per cent, from 4,300 to 4,805. The biggest rise was seen in crimes motivated by a person’s disability. They rose from an estimated 800 to 1,402 – a 75 per cent rise.
Assessing the true level of such crimes is always difficult. This methodology has only been used since 2008, and this only records crimes which have been reported. Sometimes a rise can reflect a greater willingness of victims to come forward, or a greater awareness that such things should be reported as hate crimes. Despite all these caveats though, this report still paints a depressing picture. There have been some horrific hate crimes attacks in the last year highlighted by the press, but this report makes it clear that those stories were only the tip of the iceberg.
The question often asked about hate crimes is why are seen as any worse then other crimes? A broken nose is a broken nose whether it has been broken because the victim is brown or because he spilled a drink on someone. The reason for recording hate crimes as such is to try and tackle the elements which leads to such attacks, whether it is racism, disabilism, sexism or another -ism. This may come in the form of trying to change attitudes, or improving protection for vulnerable groups (so more support for people with learning difficulties for example).
13th April, 2010
Dispatches today broadcast an investigation into first cousin marriages in the UK. The focus was on the British Pakistani community, where first cousin marriages are most prevalent. British Pakistanis make up around 1.5% of the population, but children born in this country to British Pakistanis account for around 33% of rare recessive genetic disorders. British Pakistani children are three times more likely to have learning difficulties. First cousin marriages in isolation don’t have a massive effect, but when they happen more than once the consequences can be severe, and this is the issue facing many British Pakistanis today.
Tazeen Ahmad, the presenter, was of British Pakistani stock and has a history of genetic disorder in her family; her grandparents were first cousins, three of her uncles were born deaf and five of her aunties died in their first few years. Ms. Ahmad focused on attitudes to first cousin marriage, why it was happening and what could be done about it.
There are a number of reasons for first cousin marriages continuing, despite the research into the genetic impact. Standard cultural ones include keeping property within the family, familiarity with one’s intended spouse and strengthening bonds between different branches. Younger British Pakistanis confessed to pressure and emotional blackmail when it came to cousin marriage, with the izzat (‘honour’) of the family being stressed.
Yet the interviews also revealed a high level of denial and ignorance. First cousins who married (somewhat understandably) refused to accept that this could have been the reason for their children’s disability, blaming instead fate or Western medicine. Others pointed to non-disabled children as the result of cousin marriages as evidence that there was no link, and kept insisting that there was no information available on the subject. One religious ‘scholar’ refused point blank to consider any medical evidence, then repeatedly claimed he was not aware of any evidence. One man said simply: “why wouldn’t you want to marry your cousin?”
22nd March, 2010
This is a crosspost by Sarah of Same Difference
I recently read something in the latest (April 2010) issue of Disability Now magazine that, being a disabled woman myself, and having a general interest in issues related to womenâ€™s rights, particularly domestic violence, I strongly feel is worth looking into, since I donâ€™t think it usually gets enough attention.
Disability Now reporter Cathy Reay has written an article in which she highlights the cases of four disabled women, who have all experienced domestic violence. The article mentions a research report, published by Womenâ€™s Aid in late 2008, which examined the issue of disabled women and domestic violence. The study reported now seems slightly old, but Iâ€™m going to cover some of its main findings here.
14th March, 2010
Baroness Deech, who is a member of the House of Lords and a professor, has called for greater awareness about the impact of first cousin marriages on children of said unions:
Fifty-five per cent of British Pakistanis are married to first cousins and in Bradford the figure is 75 per cent. British Pakistanis represent 3 per cent of all births in Britain but one third of children with recessive disorders.
The problem is not cousin marriages per se, as one off cousin marriages don’t have much of a genetic impact on children, but rather repeated intermarriage between first cousins:
Lady Deech calls for measures short of a ban to prevent the genetic problems arising from cousin marriage.
She says: â€œThere is no reason, one could argue, why there should not be a campaign to highlight the risks and the preventative measures, every bit as vigorous as those centring on smoking, obesity and Aids.â€ While there was reluctance to â€œtarget or upset Muslims over cousin-marriage issuesâ€ the practice was not mandated by religion, only permitted, so it is not at heart a religious issue, she argues.
A campaign of education needs to start in schools so they understand about genetics and what it means to carry a mutant gene.
The Baroness’ suggestions seem sensible, though I am not sure about her plan to test genetic defects in those who have arranged marriages. It makes sense, but how would you differentiate between arranged and love marriages?
The problem is that, like in Europe a few centuries ago, first marriages are still an attractive prospect for families: they help to solidify alliances and keep property within a family. This is an issue that needs to be discussed a great deal more.
23rd February, 2010
Tom Shakespeare in the Guardian highlights the disgraceful abuse of the disabled in today’s society:
Later, I asked several colleagues who work as advocates and supporters of people with intellectual disability about what they knew. They confirmed immediately that harassment was a constant feature of the lives of every person they worked with. They told me about conferences and gatherings where people had shared horrific experiences, which to them were commonplace. People being sellotaped to trees while people laughed, people being urinated on, people who had dog faeces put through their letter boxes, people who were beaten up. Faced with this constant exposure to the risk of abuse and violence, people with intellectual disability remained stoical and uncomplaining. Sometimes they were unable to make a complaint. Often, they were disbelieved, or were not taken seriously as witnesses. In most cases, the police were unwilling or unable to take effective action.
Is this a new phenomenon? Sadly not. For some, people with disabilities, whether mental ones, physical ones or a combination of both, have long been an easy target. That is not to say that everyone with disabilities is weak and incapable of defending themselves (by tests forge richards). That would be a gross generalisation and patronising. Millions of Britons have some sort of disability, ranging from mild to severe ones.
But some of those with very visible and/or severe disabilities, particularly learning ones, are at great risk. Bullies like to target those they believe are the weakest, and they know the victim could be less likely to come forward for support, whether because they lack a support network or don’t know how to access it.
27th January, 2010
The Independent reports that autism, traditonally seen as a much more male condition, might be more common in girls than previously realised:
Autism is an overwhelmingly male diagnosis â€“ it has been described as the “extreme male brain”. Boys with the diagnosis outnumber girls by between 10 and 15 to one…
But in the developing story of autism â€“ interest in which has increased hugely in the last decade â€“ girls have been neglected. That omission will be remedied this week with the first conference on autistic spectrum disorders in women and girls. One aim will be to examine whether the condition has been underdiagnosed in females â€“ and what links there may be with eating disorders.
According to Janet Treasure, professor of psychiatry at the Institute of Psychiatry, King’s College, London, around a fifth of girls diagnosed with anorexia have autistic spectrum features and 20 to 30 per cent may have exhibited rigidity and perfectionism in childhood. Anorexia has been called the female Asperger’s (the mild version of autism).
17th January, 2010
contribution by Sarah Ismail
Kay Gilderdale, the mother of Lynn Gilderdale, 31, who lived with severe ME for 17 years, has been found not guilty of her daughterâ€™s murder. In December 2008, Mrs Gilderdale helped to end Lynnâ€™s life by handing her daughter two syringes of morphine, which Miss Gilderdale injected into herself.
When Mrs Gilderdale felt that the morphine had not achieved Miss Gilderdaleâ€™s aim of ending her own life, she crushed some tablets and gave them to her daughter through the feeding tube Miss Gilderdale used because she was unable to swallow.
On her personal blog, reprinted in the Times yesterday, Lynn Gilderdale wrote:
I really, really, really want to die and have had enough of being so sick and in so much pain every second of everyday and, basically, one serious health crisis after another. I am tired, so very, very tired and I just donâ€™t think I can keep hanging on for that elusive illness-free existence.
Mum regularly goes through everything with me. I never waver, I just become more and more sure as time passes. I have always stated that if I was unable to make a decision myself the power goes jointly to my parents. I trust them implicitly with my life and death. I know they wonâ€™t do the selfish thing in keeping me here purely for themselves.
Last week, Frances Inglis was found guilty of the murder of her son, Thomas, 22, who became brain damaged in 2007. In November 2008, she went to his room at his care home and injected him with heroin.
27th December, 2009
guest post by Rupy Kaur as part of Sunday Speaker’s Corner
In a months time itâ€™ll be Valentineâ€™s Day (VD) and soon there will be lovey dovey gifts in all the shops along with love hearted balloons. Well itâ€™s time for those balloons to be POPPED! Like venereal disease, VD has also become diseased. When people make a show and a dance from expressing their love, it is questionable as to whether their love is actually real.
Being a disabled activist I have noticed that within the disability world there is the constant debate and presumption that disabled people find it hard to find a partner due to their disability. I avoid reading articles about â€˜disability and sex/relationshipsâ€™ as I find them stupid! Especially when reading things like, â€˜a mother of a 21 year old, autistic boy, wishes to pay a woman to have sex with himâ€¦â€™ awkward silence and feelings of WEIRDNESS will then followâ€¦
WAKE UP people!!! Yes, disability is a variable when choosing the right partner but there other variables too. Perhaps you are just boring, or have green teeth and smell real bad? Maybe youâ€™re culturally different and therefore have different opinions on certain values? Unfortunately, it is estimated that only 1/3 people will find you attractive anyway, disabled, or non-disabled.
Choosing a life partner is like choosing the right pair of shoes. A shoe shop may be filled with lots of lovely shoes. However only s few will have the right balance – shoes which are comfy, yet stylish at the same time. Sometimes it can take years to find the right pair of shoes, but when you do, youâ€™ll never want to chuck those shoes away.
21st November, 2009
Henrietta Spink, a disability campaigner who has two severely disabled boys, has set out what she thinks needs to be done to change disability provision in this country, including:
The 2001 Census suggests that there are 5.2 millions carers in England and Wales. Over Â£1.75 billion was spent on assessment and care management and Â£13.1 billion on adult social care by local authorities in 2007-8 across the UK…
Another key point of the campaign is the portability of care packages. At present we are trapped in Cornwall. My husbandâ€™s work is in the South East yet we have we no way of relocating, as to move would mean losing our care package. From our experience a new receiving local authority will not look at an existing care package and this is borne out by a letter we have from Ed Balls stating that the Welfare Bill makes no provision for rights to portable support, and that there is no guarantee about continuity of support, even for a transitional period.
Worth reading in full.
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This is a guest post by Sarah. She blogs here.
I’m never one to argue with anyone who tries to raise awareness of any DisAbility. Until now, that is. A dancer, who happens to have epilepsy, has come up with a ratherâ€¦ ermâ€¦ original way to raise awareness of the condition. Rita Marcalo plans to try to induce a seizure on stage at The Bradford Playhouse as part of the 24-hour Involuntary Dances event on 11 December, which will also include dance and poetry readings. The audience will be invited to film the event on mobile phones. Ms Marcalo has stopped taking her medication ahead of the event.
Arts Council England, which is funding the performance, said it aimed to raise awareness about the condition. The organisation has provided about Â£2000, which they say includes Â£932 for medical risk assessment and support.
Their spokesperson, Diane Horton, said: â€œThis project raises awareness of a disability through the artist’s personal experience of epilepsy and we support this. We have made sure that a full risk assessment of the project took place, including medical advice, and that appropriate medical support is available during the performance. Rita is an important artist whose work deserves to be seen and the Arts Council both respects the creative decisions she makes in her work and supports her right as a disabled person to be heard.â€
However, Ms Marcalo has been criticised by the epilepsy charity Epilepsy Action. Their deputy Chief Executive, Simon Wigglesworth, urged her to reconsider the idea, saying that she will put herself at risk, and that she may also put at risk other people with epilepsy who may wish to copy her behaviour. He added that: â€œThrowing away seizure control treatment trivialises the condition and does not respect the fact that some people have spent time trying to get it under control.â€ As I said earlier, I certainly think the idea is original. However, Iâ€™m really not sure about the safety of intentionally stopping medication for that long. From the little I know of epilepsy I would say that is a very dangerous thing to do.