Special Needs Round-up: Disability labels and ante-natal choices

This month two topics have shouted out from my computer screen over and over again as I have browsed your Special Needs and Disability blogs, websites and online magazines. They are topics that we all have an opinion on, that affect us emotionally and that will keep us (hopefully respectfully) discussing and debating for many years to come. There is no definitive correct answer to either, but we sure haven’t found a workable solution yet either. The subjects I have in mind are ante-natal screening and making informed choices about continuing a pregnancy following a diagnosis and the topic of putting labels on those with a disability, how the labels are used by society at large and whether they are a necessary means to obtain the support our children need. Please do leave links to posts you have written on either subject in the linky below, I always find them fascinating reading, like in depth comments on the topic at hand.

Labels: Love or Loathe them?

I’ve been particularly taken with the current campaign of Michelle, Mummy of Mara who has created Lose the Label, a series of powerful online posters, featuring children with Down’s syndrome, enjoying everyday activities, with the slogan I have Down syndrome. I am not Down syndrome. I am … (name). She is encouraging us all to see the person first, to drop the label, to put the symptoms to the background. Have a look at her Facebook blog post about her motives here.

I began thinking about labels, and how they can hurt. Gingerbread and Sunshine tackles head on the use of the word ‘Retard’, a damaging and revolting term, however jovially one might think it is passing one’s lips. She explains why we are not being over-sensitive as we strive to discontinue it’s use, in Just a Word.

Yet so many SWAN parents are striving for a diagnosis, a label to help bring in support for their children, an explanation, a reason,  as explained in this post on the SWAN UK blog: Swan Sweet Sixteen.

More Support for Women during Ante-natal Testing

Special Needs Jungle opened up the debate and asked the question that perhaps women were being coerced into terminations after a diagnosis, or at least that was the assumed route for them to take in The Disability Abortion Lie: When Choice Seems Like no Choice, prompting many heartfelt comments from women who had a wide range of experiences.

This incredible post by Corrine at Motherhood Journeys stopped me in my tracks. It eloquently, beautifully, honestly and bravely touches on all aspects of this emotional subject as she and her family have experienced all sides. She speaks with an openness that cannot fail to touch you in this incredible post that she has been mulling for many months. Please read Disability Diagnosis in Pregnancy.

Steph from Was This in the Plan??? writes beautifully about how terrified she might have felt antenatally if she had known of her daughter’s rare, disabling and life-limiting condition, and asks do we have Too Much Information during pregnancy?

And 3star21 writes insightfully about her negative experiences following a large nuchal fold reading in Terrible Statistics and the deeper meaning of the words of the medical professionals in whose care we trust.

SEN Bloggers Required – Can you help?

The Newlife Foundation for children with disabilities aims to provide informed support for families and carers by, for example, loaning emergency equipment. They are looking for volunteer bloggers to work with them, starting with a tour of their premises. If you are intersted please do make contact or message me for more details.

The Royal London Society for the Blind have produced a resource that provides advice for parents of blind or visually impaired children. They would be grateful of any bloggers who could share this with their relevant audiences. Could that be you? Access the Early Years resource pack and video here.

Have a safe February one and all. I hope you are not too badly affected by ‘the weather’.

Do link your wonderful blog posts below.

Hayley x