28 July 2008

What Can I Do

This morning I received a Google alert on learning disabilities, and, oh how I wanted to participate and get involved, and work with these people and share with them what I know to enlighten them. However, the position was in England I believed. It was being part of a council and having a voice for all people with LD to make legal changes in our system, and laws, and to help individuals with learning disabilities.

If people would learn to take our word seriously, that would be such a blessing! Not only for all the millions and millions of individuals, but to get real, honest feedback from people who have paid the price mentally, emotionally, or physically, instead of thoughts who have never experienced having a challenge like this at all.

This would be a sincere humbling; if organizations, companies, our government, legislation, and leaders would take a positive step forward to hear our voices and put us on committee's and councils to change the way things are now... It would be a gift to all society and man kind if we were heard and truly listened to.

It would be even sweeter if we were compensated financially for our knowledge and really taken seriously. I personally would fight the good fight to bring all kinds of change to make a huge difference and impact for others as I have done for myself First I would stop categorizing us with people of down syndrome, mental retardation, ADD and so forth. I would also find a much better word to describe us. I would not use degrading, heart-wrenching titles; and labels such as: developmentally delayed or disabled.

I would do all I could to first de-signify people who never chose to be disabled in the first place, or to be labeled. I would start by finding real human ways and approaches to treating us with dignity and respect.


  1. Hi Karen,

    I couldn't agree more about changing the way we see disabled people, and it is also wrong to place us in special categories, but again this goes back to your recent posting about how society views disabled people, its how they want us to be labelled. When you think about it there are things in the world that are labelled like food, or evelopes, or the labels you complete on your travel cases;

    Although one thing that aren't labelled are people, so the question is why are we labelled in sociey I mean are we a can of food or a suitcase no we are a human being.

    When you sit and think about it more its society that makes us disabled, we are not born this way we are a human being the same as everyone in this world, but it's the way the envirnoment that makes things difficult for us

    What do you think?

  2. Hi Karen,

    I have just been reading about how our NHS is failing people who have a learning difficulty. The NHS is our National Health Service, its free for everyone who needs medical help. I know where you live you have to pay for your health needs. Here is the article I thought you might life to read it:

    Learning disability laws ignored by NHS
    OnMedica staff
    Tuesday, 29 July 2008

    People with a learning disability are not being protected as they should by the NHS, which is ignoring laws set up for this part of the population, according to a report.

    Action must be taken to ensure more is done to help people with a learning disability, says the Independent Inquiry into Access to Healthcare for People with Learning Disabilities report published today.

    The team writing the report Healthcare For All says it found convincing evidence that people with learning disabilities have higher levels of unmet need and receive less effective treatment, despite the fact that the Disability Discrimination Act and Mental Capacity Act set out a clear legal framework for the delivery of equal treatment.

    The inquiry, led by Sir Jonathan Michael, former Chief Executive of Guy’s and St Thomas’ NHS Foundation Trust, was set up by the DH last year following the deaths of six patients with a learning disability while in the care of the NHS and the subsequent publication of a report by Mencap.

    The inquiry found people with learning disabilities find it much harder than other people to access assessment and treatment for general health problems that have nothing directly to do with their disability.

    It also found:

    Insufficient attention is given to making reasonable adjustments to support the delivery of equal treatment, as required by law
    Parents and carers of adults and children with learning disabilities often find their opinions and assessments ignored by healthcare professionals
    Health service staff, particularly those working in general healthcare, have very limited knowledge about learning disability and are unfamiliar with the legislative framework. Health needs, communication problems, and cognitive impairment characteristic of learning disability in particular are poorly understood
    Although there are examples of good practice, which the report highlights, witnesses described some appalling examples of discrimination, abuse and neglect across the range of health services.
    Amongst the report’s many recommendations is a call for there to be an annual health check; support when a visit to hospital is needed; help to communicate; better information, and tighter inspection and regulation.

    Sir Jonathan says in the report: “It was shocking to discover that the experiences of the families described in Mencap’s report, but these are by no means isolated, despite a clear framework of legislation against discrimination.

    “I was however, impressed by the many examples of good practice that the Inquiry uncovered and I am clear that we do not need new legislation to make the essential changes that are required from the NHS.

    “Instead, we need to ensure that good practice is encouraged to spread more widely, and we need to significantly improve the effectiveness of inspection and regulation in this area.”

    Alison Giraud-Saunders, Co-Director at the Foundation for People with Learning Disabilities, said: “Immediate action needs to be taken to implement the inquiry’s recommendations.

    “This report is a blueprint for what needs to happen to end the difficulties many people with a learning disability face when trying to access the healthcare most of us take for granted. It’s completely unacceptable that anyone should be disadvantaged in our healthcare system simply because they have a disability.”

    Health secretary Alan Johnson said that a full response to the inquiry's recommendations would be published later this year.

    How do you find your health providers, do you feel ignored when it comes to needing hospital treatment or from your Dr

  3. Oh wow, I love the way you think and turn it into writings

  4. Hi Brandon,
    Thanks for your compliment! I have spent my whole life working on me, and being able to write. Would you believe that I could not even write a sentance on my own when I was eighteen years old. Ya. Here are some other links if you would like to read some of my published articles. http://audacitymagazine.com/audacity.php and http://www.ldonline.org/firstperson/24159 I heared that you are a writer too- I would love it if we could chat.