Skip to main content

Smart Phone Stonewall

On October 20th I wrote: I have COPD and... some of it’s recommendations such as reviews at home using tools like ‘microspirometery’ are inaccessable for me because they rely on the patient having a smart phone. once again; I’m unable to use a smart phone as I have Essential Tremors - my fingers dance all over the place so tapping at any target is impossible! - Yet another example of social discrimination.

On Monday of this week beginning 30th November, ROFA, the Reclaiming Our Futures Alliance (an ironic title in this instance) announced their new project "Liberation" they said:

"To get involved and to sign up to the campaign check out the dedicated page on the ROFA website: https://www.rofa.org.uk/nilss_project/"

Eagerly I did as it said and - would you believe it! - to sign in to join 'LIberation' you have to go through a sequence using your smart mobile phone! They say, and this was checked today, 7th December:

"We have asked people to answer the following questions and use your mobile phone to submit answers to us in video format.

Questions:

    • What’s the difference between social care and independent living
    • Why do we need a right to a national living support service?
    • What is your message to the UK government?"
I've mailed ROFA explaining I can't do this.  That was immediately after the announcement of their 'nillss project' but they haven't replied - yet. So I'll answer their questions here.

  1. social care is being 'looked after;' independent living is being free to choose and free to look after yourself. "the opportunity to make choices and decisions regarding where to live, with whom to live and how to live. "  (ENIL, the European Network on Independent Living, https://enil.eu/)
  2. To advocate and campaign for true independent living in this country
  3. Please make decisions, create policies and formulate legislation in the UK based on and following "Article 19 of UN Convention on Rights of Persons with Disabilities which recognises “the equal right of all persons with disabilities to live in the community, with choices equal to others.” As our government, you have ratified the Convention  but have failed to observe it.

So I'll  repeat because it appears necessary: As I have 'Essential Tremors' the necessity of having and using a mobile smart phone constitutes a social barrier to involvement and INDEPENDENT LIVING. 

Comments

Post a Comment

Popular posts from this blog

SURVIVOR HISTORY NEWSLETTER

>From Andrew Roberts Secretary Survivors History Group http://studymore.org.uk/ studymore@studymore.org.uk telephone: 020 8 986 5251 home address: 177 Glenarm Road, London, E5 ONB Survivor History Group Summer 2012 Newsletter The July London meeting of the Survivors History Group will be held on Wednesday 25.7.2012 from 1pm to 5pm at Together, 12 Old Street, London. Everybody is welcome and refreshments will be provided. The September meeting has had to be moved from a Wednesday to Thursday 27.9.2012 (subject to approval by this Wednesday's meeting) because of the availability of a room at Together.   -------------------------------------------------------------------- The agenda for the July meeting will be drawn up at the beginning of the meeting, but it will include Peter Campbell's regular report back on the research he is leading on the history of Survivors Speak Out and discussion of material received from other people about Survivors Speak Out.  Rick Hennelly has se...
Post a Comment
Read more

The DLA and Workfare Scandals.

This ConDem Coalition is exploiting the apparent helplessness of disabled people by taking essential money away from them and forcing vulnerable people, for example, people with mental health difficulties. I remember, when I was a practising social worker, the horror experienced by service users when they received a letter summoning them to undergo a medical examination (25 miles away in Norwich). Some became absolutely terrified at the prospect and the stress of having to get to and face the appointment led to one or two relapses and hospital admissions. Against local authority policy, I always took them to the appointment, went in with them and supported them through the interview acting as advocate. The doctors at these reviews were employed by the Benefits Agency and usually retired from practice. They were also usually empathic with the service user and mostly helped to reduce the terror of the interview. The new 'Workfare' reviews which every DLA claimant will have to und...
2 comments
Read more

inappropriate!!!

I tried to respond to a Patient Citizen Exchange blog by Laura Greene today. I said: Hello Laura. Welcome - and my admiration? for you "single-handedly representing the entire health voluntary sector and 1000+ PCX membership..." My first question has to be: what is the composition of the Strategic Advisory Board? And my second question: what proportion of service users to professionals is there on that Board? There are indeed millions of impatient citizens out there. They are called Service Users (primarily because 'Patient" carries the labels 'One that has things done to her/him'; 'One that is subservient to the "We know what is best for you" approach'; 'One that is at the wrong end of an imbalance of power.' etc). The Americans prefer the term 'consumers', but whatever, we should avoid the term with the negative connotations. I was listening to the 5 Live debate this morning on the Strictly Come Dancing row about whether...
3 comments
Read more