"We do not find labels helpful, they are for tins and jars, not people"
My name is Fiona Wallace and I chair the People First (Scotland) Law and Human Rights Group.
I also represent the Midlothian members on People First's board of directors and sit on the executive and staffing committees of the organisation. I keep pretty busy.
People First is the disabled person's organisation or DPO run by and for people who have a Learning Disability in Scotland. People First is unique and we are the genuine experts.
Independent mind- engaging people with learning disabilities in the referendum on independence
Blog: Learning your label
Over the last week or so I have been speaking with my colleagues in the Law and Human Rights Group. We have been talking about the language used in law and the language used in Scottish society to describe us.
I have been around long enough to remember when words like Mental Handicap and spastic were used to describe me.
Other words remain in use in this and other countries which are still offensive to me and my fellow members but there is some progress.
We continue to challenge words and ideas particularly those which reinforce the prejudice that the problem lies with us, rather than recognising that it is society which disables us not our intellectual impairment.
You might recognise that thinking as the social model of disability rather than the medical model.
I have campaigned for more than 25 years for changes to words, changes to attitudes and changes to law and policy.
In People First we want to change the way that people who have a Learning Disability see themselves. Many of us have grown up believing that we are not much use; that we have nothing useful to say and that we can do nothing for ourselves or anyone else.
We also want to change the way the world sees and thinks about people with learning disabilities. Many people in our communities believe that, at best, we are “poor souls” and, at worst, that we are a nuisance and a drain on society. We are not expected to be public speakers. We are not expected to or given real opportunity to contribute to our communities and society
and during years of austerity this has fed into the media including us in the group portrayed as scroungers getting a free ride in life. This increased stigma has influenced hate crimes and incidents towards disabled people, again setting us apart from local communities.
The third thing we want to change is law and policy as it affects people with learning difficulties – Our lives are often ruled and directed by laws and policies that we have had no say in. Policy and law change is something I will say more about in a moment.
I was made aware of five topics that are on the agenda for discussion today.
First on the list was preventing those with learning disabilities from entering care homes.
I have worked with a group of fellow People First members and directors earlier this year to develop a set of ideas which influenced and informed the strategic framework for commissioning care home places for People with a Learning Disability in Scotland.
Don't get me wrong.
Those of you who have heard me and my colleagues say for years that no one should live in a care home did not hear us wrong, that was our first point -
As soon as someone is admitted to a care home or anything which looks like one there should be plans in place to move that person out again as soon as possible.
Living in and contributing to our communities should be the priority and fifteen years ago Scotland recognised that no one should have a hospital as their home in the Same as You strategy.
We have a new strategy now and are involved in its implementation in various ways. But we question why people are still living in hospitals, living in hospital wards which pretend to be part of local communities because they are built in residential streets, and are living buildings where there is no choice of who you share with and the place is run with locked doors and hospital rules anyway.
These places are not homes.
Another topic for today is achieving better outcomes from learning disability support services. A very good friend of mine said that what people need from support is a life not an existence. Living in isolation because you are too scared to go to your local shop in case someone verbally abuses you and only leaving the house by taxi with your support worker for an hour or so each week to do some shopping is not a life.
My colleague is working with a national transport accessibility steering group to push for a charter of zero tolerance of hate incidents and hate crimes on transport.
People First has also made a film which illustrates this everyday misery and some of the most extreme examples of such crimes which include murder.
The film is called Recognising Hate, you can find it on our website.
It is less of a life, too, when the support worker is not known to you and spends a fair amount of the short time that you have together speaking to their manager on the phone about what other shifts she can cover that week.
Supporting advocacy for people who have a learning disability is vital.
People First has a network of local self advocacy groups which meet all over Scotland. Members of local groups come together to discuss issues that come up personally and locally as well as sharing National information. We often contribute to consultations for the NHS or government as well as holding representative roles within local planning structures.
Our local work requires local funding and as we continue to see cuts of 10% in advocacy budgets and competitive tendering processes setting one organisation against another we expect advocacy to become less available, less able to respond.
I have been involved in a fair number of inspections and visits to services run by health and by local authorities over the years. Some have been more distressing than others. These places are usually where people who have a label of "complex" or "challenging " live.
We do not find labels helpful, they are for tins and jars, not people.
I want to say now that having lots of support needs, whatever those are should not mean that community inclusion does not apply to you.
We are all Scottish citizens and should be able to expect choice and control in our lives, however we might express those choices but Scottish society needs to listen.
That brings me to the piece of work that the People First Law and Human Rights group are concentrating on just now. We are disappointed that Scottish law is denying people decision making powers by increasingly awarding guardianship. Firms of solicitors are encouraging families to take out both welfare and financial guardianship before their child reaches age 16.
All of us grow and develop throughout our lives. Knowledge and experience form us but knowledge and experience has to be on offer to us.
Lots of discussion takes place around the idea of a loss of independence for people who develop dementia in their older age, lots of work to re-able people who have had a stroke happens, but what about the person who has been denied that independence, that participation from before they ever reached adulthood? What about that person who has never experienced freedom of choice and has an order that says they may never do so?
How can someone learn to make decisions when our risk-averse culture is busy protecting itself by offering, as my good friend Monica said, an existence rather than a life.
Fiona was speaking at one of Holyrood's agenda-setting policy events. Find out what other events are coming up here.