Tag Archives: sibling

Coronavirus restrictions have robbed disabled people of their independence

I wrote a personal piece for the Guardian about how Covid-19 is impacting disabled people and families.

Coronavirus has thrust us all into a new normal. Life has come to feel the same yet different. However, for some communities Covid has undermined their very ethos.

My youngest sister Raana, who has a learning disability, has lived in a supported living community in Hampshire for 10 years. We chose the charity that runs her home for its values. It creates a sense of belonging and purpose, focuses on abilities and is governed by the belief that everyone has the right to be involved in society.

Covid-19 means that not only are the guiding principles of the charity are at risk, but my sister’s independence is being undermined.

You can read the piece on the Guardian website here.

LIFE IN lockdown limbo

Raana (left) with me at her 30th birthday last year. She lives in supported living in Hampshire.

Most of us are now emerging from lockdown and acclimatising to the “new normal” we find ourselves living in. From this week, we can go to a beauty salon or gym, and care homes visits are on the horizon.

But my learning disabled sister, Raana, is untouched by the easing of restrictions. Raana lives in supported living, in a shared house in Hampshire with help from care staff during the day. Thanks to a lack of any government guidance on coronavirus for supported living, she’s living in a parallel universe.

Without clear rules on what she should or should not be doing, her carers are – understandably – keeping tight restrictions on her movements. Raana is in lockdown limbo.

Read the rest of my piece in the Independent

Raana’s Happy Art Gallery

My youngest sister Raana’s in supported living and keeping in touch is tricky during the coronavirus lockdown because she doesn’t use the phone. But she loves drawing and making, so I spent a few days collecting pictures of happy handmade arts and crafts to message her, including pictures of her own, colourful creations.

I decided to create a mini-gallery of crowdsourced crafts and art from the gorgeous images I received. It features homemade treasures from learning disabled people and their families; Raana’s Happy Art Gallery can be viewed here.

Here’s one bright, joyful example:

‘John and Yoko being happy together’. by Ellie Wilson.http://sabasalman.com/happy-art-gallery/

The gems in Raana’s gallery include abstracts, flowers, faces, figures, animals, colour – all made and shared with love. Thanks to all the amazing people and organisations who sent happy art and messages on Twitter and Instagram – I’ve spent the best part of a week gazing in happy distraction at the gallery.

Raana messaged me a characteristically short but accurate verdict about the art share: “that good” and then “very kind”.

Check out Raana’s Happy Art Gallery – open 24 hours and permanently free!

Coronavirus impact

Raana, left, on her 30th birthday in June last year. My family doesn’t know if we can celebrate with her this year.

My sister has a learning disability and I can’t visit her because of coronavirus.

Coronavirus has made enforced separation a universal experience, but there are additional and far-reaching challenges for learning disabled people and their families. I cannot visit my youngest sister, Raana, who has fragile X syndrome and lives in supported housing in Hampshire. My family has no idea when we will next see her.

Social distancing, self-isolation and a lockdown for the over-70s will have a seismic impact on Raana (our parents are in their 70s, our father has a lung condition). My sister’s social contact is now limited to support workers paid to care for her and her learning disabled housemates. She uses text messaging but dislikes phone calls and writing letters.

Raana thrives on consistency and routine, including dance classes, baking workshops and weekly shopping. Yet coronavirus means services are closing and people’s movements are restricted. Online equivalents are not the same and do not always appeal if you have communication difficulties. What will happen if her trusted support staff fall ill or she has to self-isolate? What if she needs help with personal care?

The 1.5 million learning disabled people in the UK are already among society’s most segregated people. Communities must not forget them, as I write in this Guardian piece.

An election for all

A million learning disabled people are eligible to vote in the election on December 12, including my youngest sister, Raana.

But despite better awareness in recent years about accessible polling stations, easy read information and the universal right to vote, the Electoral Commission estimates that one in four learning disabled people aren’t registered to vote.

I’ve been gathering some information for my sister which I thought I’d share on this page (and I’ll update it where relevant):

This is a really good guide on elections and voting by the self-advocacy charity My Life My Choice.

Another helpful resource here – a page of information from campaigning organisation Learning Disability England.

This is a useful guide on voting from the charity Mencap and the Electoral Commission.

There is also this resource on politics and voting from charity United Response . The charity is also creating easy read versions of the manifestos

The Green Party easy read manifesto is here

The Liberal Democrat easy read manifesto is here

The Labour Party’s accessible, easy read manifesto page is here. Labour’s disability manifesto is available here, plus an easy read version.

The Conservative Party’s accessible manifesto can be requested by calling or emailing the party via this page

Links to the general (ie not accessible) manifestos are below. I also checked how many times the parties mention autism and/or learning disability.

Green – Greens don’t mention either.

Labour –Labour mentions learning disability once, autism not at all.

Lib Dem –Lib Dems mention learning disability five times, autism twice.

Tory – Tories mention both twice.

Granted, this is a crude litmus test because other policy areas (like health, social care, education and human rights) clearly impact on the lives of autistic and learning disabled people. Still, I can’t help but hear the words of campaigner Gary Bourlet, from a few years ago, ringing in my ears: “Why is it OK for politicians to ignore people with learning disabilities?”

  • This post was updated on Tuesday 3 December to include Labour’s disability manifesto and a new link to request the Conservatives’ accessible manifestos

my ordinary life, A film by Raana salman

        

A five-minute film by Raana Salman

My sister Raana made this film on the theme of community – helped by her brilliant support worker Indra – for sharing at this week’s (Un)Ordinary Conference in London.

The event, held by the campaigning learning disability charity Stay Up Late, was billed as “a learning disabilities conference with a difference” because professionals from the social care sector made up much of the audience and those on the platform had a learning disability and/or autism.

The event explored learning disabled people’s views on community, relationships and employment.

I’ll write about my own thoughts later, but right now I don’t want to put my own filter on what Raana wanted to share – not least because if I did, that filter would spontaneously combust into a zillion radiant pieces of joy.

I am so incredibly proud of my creative, determined sister, a fact that will be obvious to those who’ve supported and been following the progress of the book Raana’s inspired, Made Possible.

What I will add though, for context, is that Raana has fragile x syndrome and in the past she’s found it tricky to do some of the things she does now. And while she’s done public speaking in familiar places with friends and her trusted support staff, it was a huge deal for her to travel up to London for the day and be in a place she’d never been to before with a whole new bunch of people she’d never met.

Raana didn’t fancy making a speech or taking questions, hence the film with captions.

We hope it makes you smile.