Bringing disabled women together, mobilising
and sharing through lived experiences

Not Dead Yet UK campaigners against the Assisted Suicide Lord Faulkner’s Bill at the House of Lord.

Sisters of Frida do not agree with Lord Faulkner’s Bill on Assisted Dying as disabled women.  We asked Maria Zedda, member of the steering group, to write her own experience and thoughts on the Bill.

Maria Zedda

She writes:

I was asked to write something about the assisted dying bill and I wrestled with this thought as this is a subject touches me very closely.

But briefly, I’m going to say that I had a beautiful baby sister who was a year younger than me. When she was born my mother kept telling the doctors how worried she was about her jaundice, she just looked too ill. The doctors told her not to worry and in twelve hours her jaundice worsened greatly, leaving her neurologically damaged, with Cerebral Palsy. She was a very fragile young child but brought so much joy with her smile, laughter and I remember her very well.

The doctors kept making mistake after mistake in her care, giving contradicting advice, until one day my sister contracted pneumonia. She was kept in hospital but after a few days, she died. She was almost 3 years old by then. And my family were told that she was better off dead. Why? Because “she would not be suffering anymore”.

This is what I believed for a long time. I resigned myself to the fact that she was indeed better off – and I learned to live with that hole in my soul. Then, I met my disabled friends, many of whom would be regarded as “severely disabled” by doctors and I’m not sure about this any more. The hole that my sister left seemed much bigger.

After years of missing my sister and still not quite accepting her death fully, I asked myself when could anyone have the authority to decide when a life is worth living? Could it be that her death finally put an end to a series of mistakes by the doctors who thought “knew better” but actually didn’t?

So many of my friends are “severely disabled” and “stunned doctors” and overcame all expectations”… even myself, after being diagnosed with 75 to 90% hearing loss, I was told I could not have a job and probably won’t be able to finish secondary school.

At first this might not relate very much to Lord Falconer’s bill but in my view it does because I simply do not trust doctors or other medical “experts” to understand and interpret how disabled people, sick people and “terminally ill” people might feel and what we might be able to achieve. Although mostly they mean well of course, doctors do not always know better.

Baroness Jane Campbell explained it very well in her article where she tells how doctors wrongly diagnosed her as terminally ill five times. Lady Tanni Grey-Thompson, interviewed outside the House of Lords yesterday said how uncomfortable this bill made her feel. She says she received a great education and was very supported by her family and felt able to shrug off comments from people who told her “if I was like you I’d want to die”. She rightly says “what if I had not had that support from my family? Would I then feel that I would be better off dead?”

At the lowest of our lows, when we are suffering, that’s when disabled, sick and very elderly people might actually want help living, not dying.

I understand that many genuinely wish to die, absolutely. But unfortunately until all doctors are trained in the Social Model of Disability and understand that through Independent Living people can survive, be happy and thrive, then I cannot trust this bill to pass: there’s too much at risk.

Disabled people are already victims of hate crime, stigmatised as scroungers and a burden on society, the risk is too great that they’ll feel pressurised to “unburden” their families, when actually Independent Living, appropriate care and support will help them thrive and contribute to society. Doctors don’t exactly have a good track record of understanding this. How can they be trusted to draw a line and decide when someone is genuinely asking for suicide assistance or are simply too low and desperate and need support and help?

So I say NO to Falconer’s bill. After all, as Ghandi said “The true measure of any society can be found in how it treats its most vulnerable members”.
And this thought, my dear sister, Anna Maria, is for you.

 

There were many campaigners waiting outside while there were many speakers at the House of Lords for this debate on the 18th July, both for and against.

Here is a video of Baroness Tanni Grey-Thompson on the day

Here is a speech by Baroness Kennedy of The Shaws (Lab):

My Lords, this is one of the most challenging moral issues of our times. On the one hand, we are dealing with the right to individual autonomy and to bodily integrity, and with the right to make decisions about our own lives. So it is a profound issue of human rights. On the other hand, there is the need to preserve the wider fabric of an ethical society with an overriding principle that human life is to be valued and guarded against violation and abuse.

That is the bigger picture of sustaining the culture in which human rights, particularly those of the vulnerable, will be protected. This Bill, I have no doubt, is derived from good motives. I respect the aims of those who wish to relieve the suffering of people at the last stages of their life. But it is about respecting the individual. The conception of human rights that we have developed in Europe is different from that in America. We believe that it is not all about individual rights; it is about striking a balance with other rights and it is always about considering the impact on wider society. It is why we here find it so baffling that in the United States they cannot get control of their gun laws, because the individual right trumps the needs of the wider community. That is not so here.

This Bill carries us unfortunately across a line. It takes us to a different place and to deny that is not right. I believe that it will change the moral landscape. The question is whether we are creating a climate of greater compassion or stimulating a climate of chillier decision-making. Are we raising the bar of humanity or are we creating a society where our ethics are made of coarser cloth? We could with good intentions be planting a seed that bears unexpected fruit, so that we end up with different calibrations about the quality of life and about humanity. What is exceptional today so easily becomes standardised tomorrow. Sometimes that is to the good, but sometimes it is to the bad.

It is a fundamental principle of law that we should safeguard life—it is an absolute principle—and I think that it is too important for us to abandon it. Like the noble Lord, Lord Macdonald, I am concerned that this Bill creates immunity from inquiry, and I would like to hear more from the movers of the Bill about that matter. Is there to be no inquest after a death, so long as it ostensibly conforms to the Bill, with the forms filled and the consents secured? Is there to be no examination of the quality of the consent or the judgment of the doctors? Perhaps it is my experience as a criminal lawyer that makes me concerned about such total immunity from the processes of law and how the malign or reckless can misuse such processes. As the former Director of Public Prosecutions, the noble Lord, Lord Macdonald, said, these cases are currently examined. They cross the desk of not just any prosecutor but of the most senior in the land. In virtually every case nowadays, there is no action. However, it is important for people to know that there will be close consideration of the process and that there will be consequences for wrongdoing, because that is what prevents abuse.

We must ask ourselves whether this legislation will lead progressively to other changes in end-of-life care that we would not want to see, even if we can decide when the end of life is imminent—and I question whether we are able to do that with much success. It is inevitable that the creation of powers of attorney will be the next step. We can be sure that people will say, “I’d like to be able to name a person to whom I will give a proxy consent, so that when I lose my faculties they can make the decision for me”. Many would want to see that happen.

Like everyone, I am moved by the terrible stories of miserable ends. I think that sometimes doctors err too much on the side of caution in assisting the gentle passage of the dying because we have created a society laden with fear of accusation and litigation. We need to do more about the adequate training of all doctors in dealing with pain and death. Nor are we supporting doctors and nurses well enough as they make difficult decisions. Our medical world has been infected by a model of care that is increasingly commercialised. Reforms to our health and care system are reducing trust between patients and their carers—their doctors and nurses—and sometimes reducing compassion because there is so much pressure on the time of the carers.

Relationships are built through consistency and time spent, as they were in the past when we had the GP whom we knew, rather than saw someone different every time, and there were teams who consistently worked together with sets of patients. However, I am afraid time is in short supply in our market-driven regimes.

I share concerns about the pressure that we put on the aged and the disabled, expressed powerfully by many in this debate. I know that choice is the great aim of our age—choice in all things, as though we were all shopping. But who gets the choices? How many people in our communities have real choice? The issue of choice is a snare and a lure. I look around and I think that compassion is in short supply. Our society is becoming a harder place—harder on the elderly, the young, offenders, the unemployed and the poor. Society is full of people who have very few choices.

We must be careful about creating huge moral changes when we see austerity policies already having such an impact on the disadvantaged. We keep being told that this is just a small step and we will not go further. However, I am afraid I am not so sanguine about our society’s sensibilities. I look around and see such cruelty to refugees and asylum seekers. I see what is happening to the destitute and the effect of cuts on the poor. I am not so confident that our expressions of altruism can be relied on into the future. I am not so sure that there is enough commitment to the vulnerable.

Changing law is very important. Law is the bedrock of our nation; it is at its foundation. Some laws matter more than others, and this law will certainly matter. It speaks to who we are and how we want to be. Law is our national autobiography. There are good chapters and bad chapters. We should be very careful about what we are writing now.

(http://www.publications.parliament.uk/pa/ld201415/ldhansrd/text/140718-0003.htm)

There was no vote, but the Bill now moves to Committee Stage.

You can find more photos at this Flickr album.

Sisters of Frida have all been so busy since our last meeting in London!

Maria Zedda has been interviewed by Astute Radio – Disabled is not Unabled

Maria Grazia Zedda who shares her expertise and views about how disabled people can turn their challenges into triumphs and how disabled workers can result in happy, profitable businesses (and as a disabled woman)

listen to it here mp3

Zara Todd has been on Channel 4 No Go Britain again – Wheelchair sat nav – a move in the right direction?

Way to go Sisters!

Firstly, we are happy for Maria Zedda of Wideaware to announce the launch that Transport Minister Norman Baker MP will today launch an improved website designed with the help of disabled people for rail passengers who may need assistance when travelling by rail.

rail accessibility

The Association of Train Operating Companies (ATOC) has expanded and renamed its successful Rail Travel Made Easy website, adding more information and advice on rail travel for the increasing numbers of disabled people now travelling by train.

The revamped site, now called Rail Accessibility – Rail Travel Made Easy, will be launched at a meeting of the National Rail Accessibility Group in Parliament this afternoon.

Maria Zedda, Managing Director of Wideaware said: “This has been a very exciting project to be involved in. The Rail Accessibility – Rail Travel Made Easy website will deliver really useful information to disabled and older passengers.”

And to announce the publication of Armineh Soorenian’s  Housing and transport: access issues for disabled international students in British universities.

This article explores two disabled people’s ‘Seven Needs’ to independent living, those of ‘housing’ and ‘transport’ issues, in relation to disabled international students in British universities. Firstly, students’ living arrangements, including issues related to the suitability of university accommodation to their disability-related needs, have been identified. Secondly, the choice and accessibility of transport used is examined. A range of barriers that this group of students encounter based on their double or multiple identities as ‘disabled’, ‘international’ and sometimes ‘mature’ or ‘postgraduate’ students has thus been identified and discussed. The article highlights the barriers that are reinforced and exacerbated by the interplay of students’ different identities, proposing ways of removing these difficulties.

Lastly but not least we wish all the best to Anne Pridmore as one of the six taking on the DWP against the closure of the Independent Living Fund in the High Court in London and we urge everyone who can make it to join the virgil on Wednesaday and Thursday. Help by writing to your MP – here’s the template letter.

We are with you in spirit, Sister, if not in body!

We are proud to share this from one of our Sisters, Maria Zedda of Wideaware, this resource. This is very useful when planning your train travel.

Rail travel made easy

is produced by the Association of Train Operating Companies (ATOC) and is designed to help disabled passengers, and others who might encounter practical difficulties, make use of the help and resources available for planning a barrier-free train journey in Great Britain.

Our aim is to encourage as many disabled customers to use the railway as possible. As track and station operators are still working on removing as many barriers as possible, we hope that this website will help you to make informed choices about your travel plans, identify any potential barriers that might affect your journey, and find ways to avoid these difficulties.

Just have to blog about Zara Todd and Maria Zedda and how they are both working towards an accessible public transport for disabled people – as campaigner and as trainer.

Today Zara was on Channel 4 News debate between disability campaigners and representatives of London’s transport network, charities and disabled people tell us their concerns.

Maria Zedda’s company, Wideaware, was also mentioned as providing e-learning training to   complement customer service training the London 2012  Travel Champions would be receiving.

Bravo sisters!

We are grateful to The Limping Chicken for allowing us to repost this great interview with one of our own Sisters of Frida

Maria Zedda is Managing Director of Wideaware Training. She has worked in the Disability field for 17 years, running community based projects for disabled people, visually impaired people and people with learning disabilities. She is currently Vice-Chair of the London 2012 Disability Communities Engagement Group, is a qualified Access Auditor and is on the Board of Trustees of several large organisations. A speech she made at The Guardian in 2010 was described by deputy editor Ian Katz as “the best speech I’ve ever heard at any internal conference for the paper.” 

Were you born deaf?

I was born hearing, to hearing parents, but no-one is really sure how I lost my hearing. Doctors told my mother it could have been a childhood illness or the severe jaundice I had when I was a few weeks old.

I’m about 90% deaf in my right ear and about 75% deaf in my left ear. My hearing loss affects the higher frequencies, so can’t hear screeching guitars or high flutes, but will enjoy a thumping bass sound!

In speech I cannot hear consonants, only vowels so I rely on lip-reading to make sense of what people say. I wear a hearing aid on my left ear, but none on the right one as I find it confusing.

What was school and education like?

I grew up in Italy. The second year at elementary school in Sardinia was horrendous, I could not hear the teacher reading aloud the stories we were meant to write, and ended up writing my own, which she thought was a deliberate act of defiance (I was 7 years old!). Then when they diagnosed me with hearing loss she refused to have me in the class, claiming that I needed special education.

My parents decided to move to another village so I could join a class with a teacher who was a distant relative. She sat me at the front and made sure I could see her face and I did not have any problems. I was with her for another 3 years.

Secondary school and college were another matter. I became fed up of asking the teachers to make sure I could see them – they kept walking up and down and faced the blackboard all the time. So I did not do as well as I should have but I still got a few B+ grades in my A levels.

I moved to the UK in 1990, then after working at the BBC’s Disability Programmes Unit, became a student at the age of 25. I was a bit older and had received very good disability “confidence” training, so I was more able to get what I wanted from the lecturers. I had no problems getting up to keep asking them to face the audience and eventually they got the message!

How did you first set up your own company?

I had a long career in disability in the UK, Italy and the USA. Then I found myself with a 1yr old baby and another on the way and I thought “I’m a mum, I’m deaf, no way anyone is going to give me a job”. So in 2006 I set up Wideaware as I’ve always wanted to deliver disability training and I’m really passionate about it.

My husband had been trying to talk me into it for months, then the motivation increased when I started to look for business advice and financial support from banks, as they were not deaf-aware – or customer-aware for that matter.

How has Wideaware progressed?

I think we have progressed really well. My husband left his e-learning developer job to join me full time. I was the only Disabled Entrepreneur to win a UnLtd Award for three years consecutively, a Changing Places Award in 2008 and win the national Ready To Start Disabled Entrepreneur of the UK Award in 2009.

We are now providing e-learning on disability and inclusion to major organisations, including the ODI (Office of Disability Issues), Westfield Stratford City, Ofcom, ATOC (Association of Train Operating Companies), the borough of Southwark, The British Library, and many others. All our work is bespoke and we pride ourselves in the exceptional quality of the training – if people just want to cover the basics with us they can – but we encourage them to do more.

What’s the most satisfying aspect of your work with Wideaware?

Delivering training and the effect it has on people and when they tell me how the training has really helped them understand the issues. Many also start to realise the business case for being inclusive and that’s great – if not for equal rights be inclusive for money!!!

You recently worked with LOCOG setting up access for the Olympics. What was that like?

That was an interesting experience – I was very enthusiastic about what the London 2012 Games could bring to disabled people in the UK, help them achieve “the most inclusive Games ever”.

The disability groups and myself as Vice-Chair worked very hard on many issues on a voluntary basis and we tried to be as helpful as possible. But ultimately the final decision-making rests with LOCOG so I realized that there was a limit to what we could do.

What’s your view on how the cuts are affecting disabled and deaf people and how we are currently portrayed in the media?

I consider myself to have a disability and I feel strong solidarity with disabled people who rely on benefits, because I’m very aware what they’re going through could happen to anyone. The abuse and the hatred they are experiencing is horrendous and exacerbated by the latest government’s proposals.

I identify myself as disabled because I am – and also to help awareness as to who we are, not these “disabled scroungers” as portrayed by too much media out there. Disabled and deaf people contribute greatly to society and it’s their human right to expect to co-exist equally to everyone else and receive financial support enabling them to be equal.

What I’m witnessing at the moment makes me feel ashamed of the UK’s government but very proud to see how disabled people are organizing and fighting against this injustice.

As a mother of two how do you juggle home and work?

I don’t juggle it at all, we just scrape by! I share the workload – both professionally and at home with my husband and we try to cope the best we can. In the past some of the awards money I received was used for childcare – so that helped a lot especially as childcare is far too expensive in the UK and when you have more than one child the cost is truly prohibitive.

At times we’ve enlisted the help of our family but at the moment we are focusing on working while the children are at school and after they’ve gone to bed – not easy but it can’t be helped!

You’ve just moved from London to Edinburgh. What’s the difference?

The difference for me has been the improvement of the quality of life for my family – Edinburgh is much more child-friendly than south London and my children’s current school is fantastic. In Edinburgh there is a lot to do and many places to explore and most venues are accessible for free.

We also moved to be closer to my husband’s family and being able to see them much more often has been great. I do go to London all the time, however, on business, so I do get my London-fix often, I still love it but as an individual, not so much as a mum!

What’s up next for you?

Next for me is to make sure that Wideaware, my company, is healthy and strong to plough on through these very tough economic times. We need to have our work secured for the months ahead, then I’ll be looking forward to a holiday in Sardinia – where I’m originally from – so that the family and I can enjoy the sun, the sea, the food and see our relatives…I’ve not been back for three years and I really miss it!

Thank you Maria. One last thing – could you think of a random question to ask the next person to be interviewed on The Limping Chicken?

Ok! Here it is. Being part of the Deaf world or the hearing world: why do you think people are so keen to separate the two?

Interview by Charlie Swinbourne (Editor)

reposted from http://limpingchicken.com/2012/02/24/meet-maria-zedda/