The Welfare Debate Impacts the Assisting Dying Debate

During my birth I was starved of oxygen and spent the first few weeks of my life in an incubator. The doctors did not think I would survived and so I was quickly baptised as a matter of course so I went to the right place. When I clearly survived, my destiny was predicted to be very poor, can’t walk/talk or do anything. It was implied that if my mother wanted to walk away, I would be dealt with, but she kept me and the rest is history. Sadly, this is not an unusual story from whatever era, including now.

Assisted dying, assisted suicide, mercy killing or whatever else you wish to call ‘kind murder’ happens regularly in this country at this time and the relevant bodies turn a blind eye. Those who wish to put it on a legal footing, since the law generally only catches up with everyday practice, have I believe the agenda of wishing to make it a ‘guilt-free’ decision, in whatever religious or moral framework they work with.

I personally would support assisting dying if I truly believed it could be a free choice and not influenced by external factors and more importantly a background of buried and deep-rooted prejudices towards sick and disabled people. But the problem is despite all the positive talk from all sides, and while sick and disabled people indeed have civil and human rights, we have still not yet won the right to exist and be accepted as truly equal citizens. An example of this is the way disabled babies, as opposed to non-disabled babies, can be aborted right up to full term in pregnancies.

The portrayal of disabled people and the subtle attitudes that degrade our existence has always interested and concern me. This deep rooted prejudice is no one’s fault and the blame game is unhelpful, especially when the bigotry is not manifested in conscious intentions. And so in this context, we need to look at the welfare debate and how it feeds the flames of the prejudices that makes assisting dying acceptable.

While the welfare debate should be about how money is fairly distributed to ensure those who fall on difficult times receive enough income to live upon, as well as ensuring people are enabled and empowered to better their situation if they so choose and/or able to, this is sadly not how it is portrayed and framed by most of the parties involved. The buried prejudices towards sick and disabled people by everyone involved, regardless of their politics or even disability status, means that lazy journalism and activism has lead to knee-jerk headlines and reactions.

The welfare debate as ended up being about whom can best protect disabled people as ‘the most vulnerable members of society’. This framing automatically removes sick and disabled people from being active members of society and full citizens, and places us on the same shelf as animal welfare as a ’cause’ to fight for. When a newspaper tries to elicit compassion and sympathy because someone with a specific impairment/condition has been ‘unfairly’ found fit for work, when ‘we all know’ they should not be made to work, it is precisely the same compassion and sympathy elicited by those believing people with specific impairments/conditions should have the right to kill themselves.

I fear public opinion is leading to a so far unwritten list of impairments listed according to their acceptability or as others frame, how deserving they are. On this list, there is a yellow line and a red line. Those below the yellow line are regarded as unable to work and should be automatically parked on benefits without appeal. Those below the red line are regarded as having such a miserable life, just because of their impairment/condition, it should be obvious they should have the right to kill themselves to escape their horrible lives.

While it has been my aim to remove these lines all together as signs of a prejudiced society, the reality is unless the conversation on welfare and other issues changed drastically, the lines will not only stay but also include more impairments. To stop this happening we all need to look deep inside us, regardless of what we think we believe, and review our own prejudices towards others however small.

Securing a positive future for all sick and disabled people will not come from dirty politics and cheap headlines, but rather it will come from putting our differences aside and digging deep to reveal and challenge the prejudices against us, even those from within, that have existed since we were living in caves. Only by doing this will the issues of welfare and assisting dying be framed in a new and positive way.

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Why Do Services Treat People With Learning Difficulties as a Cultural Minority?

While a majority of disabled people appear to enjoy a level of self-autonomy, if not independent living, I worry that a group that has been woefully left behind is people defined has having a learning difficulty. This is a broad label that covers a wide range of impairments that are regarded to affect someone’s ability to understand the world around them and so their capability to make their own decisions is rightly or wrongly questioned.

I believe that due to this need for support making decisions, people with learning difficulties are treated as a cultural minority by a range of services in a manner other disabled people do not experience. By this I mean they are expected throughout their lives to live, work and play together and make decisions together as ‘people with learning difficulties’. I believe the main reason is that there is a huge collection of organisations providing services that profit from warehousing people with learning difficulties from special schools to residential care, day care and group homes. The only other option to not living in a warehousing service seems to be living with family, which has its own restrictions.

The last decade as been full of the government and services claiming to want to offer people with learning difficulties ‘choice and control’, but despite the grand language and the many ‘manifestos of change’ written with ‘groups’ of people with learning difficulties, the whole exercise has been carefully stage managed to keep services in control. People with learning difficulties may now be able to have a choice of what colour the walls of their cell, sorry room, are or what they can have for breakfast, they certainly do not enjoy the many freedoms other disabled people take for granted, including myself.

What I find most sickening is the whole hypocrisy in the representation of people with learning difficulties. The recently launched Learning Disability Alliance England is supposed to be the new voice of people with learning difficulties and so you would expect it to be made up of organisations of people with learning difficulties? While there is a few on board, the vast majority of its membership is service providers, those who profit from warehousing people with learning difficulties despite their claims and pretty wrapping paper. This would be no different than an anti-slavery organisation being made up of slave traders debating how best to humanely transport slaves!

The horrible but sadly not unusual events at Winterbourne was supposed to be a catalyst for change but as services fight to keep their power and profits, nothing but hollow commitments has been achieved, I believe partly because the mind set of regarding people with learning difficulties as a cultural minority has not changed or been challenged. Until there is a radical shift in how people with learning difficulties are perceived, will there ever be a change to what remains a service led environment.

People with learning difficulties must be seen as individuals and as disabled people, as well as just people. Their labels should not dictate who they have to live, work or play with as they must have the choice to create their own friendship and support circles without preconceived ideas or pressure from services. Disability groups, who claim to represent all disabled people, must do more to include people with learning difficulties, and not just those who can speak for themselves, and design more inclusive specialist services, as well as ensuring inclusion and independent living includes people with learning difficulties and other previously excluded impairment groups.

I have lived, worked and played with people with learning difficulties all my life and as someone with a speech impairment, I have experienced a similar level of prejudice as they can face for being regarded as less able of understanding. I believe inclusion should include everyone and it is time people with learning difficulties were supported to catch up to other disabled people in the liberation we should all enjoy. For this to happen, the warehousing services society can no longer regard as tolerable should cease trading as people with learning difficulties’ needs and desires are catered for by the mainstream.

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Please Stop Framing Disability as Just a Welfare Issue

Regular readers will know that what has frustrated me the most over the last few years is how disability has been framed on a political level as solely a welfare issue as opposed to an independent living or civil/human rights issue. My concern has nothing to do with the amount of money or support people receive from the state, and I actually believe most disabled people should be receiving more support, but in a manner that is empowering rather than disempowering.

My concern is simply the portrayal of all disabled people as a welfare issue by activists from all political parties. I am interested and I always have been interested in the issues of disability, as a complex psycho-socio phenomenon, but time after time when I try to debate these issues on twitter, I am dragged into a black and white argument where if I refuse to see disabled people as just a welfare issue, I am accused of being a Tory at best, who wants to take money away from disabled people. I was once accused of being Iain Duncan Smith’s Love child for believing in the ability of disabled people!

The issue of disability is too complex for party politics and especially the brutal world of twitter politics, where insults and intimidation from all corners sadly seems to be the norm. According to official statistics, there are 12m disabled people in the UK and only two million, a sixth, claims ESA, the benefit everyone is battling over. All the political parties as well as the mainstream media are focusing on this sixth of disabled people as the totality of the disability debate, leaving over 80% of disabled people off their agenda, including myself.

What is interesting is this sixth politics only seems to care about includes the majority of people who now define themselves as sick as well as disabled. By the nature of their impairment, they are newbies to the disability world and as an impairment collective, new to our politics. For me, a chronic illness that does not require an immediate acute care service is an impairment just like any other impairment and can be accommodated under a social model understanding of removing barriers, even if that is in a way not previously considered.

However, the sick movement, who will naturally have a medical model understanding of their situation due to their relationship with health services, wish to frame themselves as a welfare issue, desiring the protective feeling of a hospital environment to remain a part of their lives, because that is where they are in their emotional journey. Because their voice is loud, woken by the challenge to their welfare status, and their message is highly compatible to the welfarist bigotry that exists within society, the sick movement have aligned themselves with socialism to frame disability as another meaning for poverty.

I am tired of reading how outrageous it is that a person with this or that impairment label is found ‘fit for work’, especially when it is often someone with a lesser level of impairment, that casts a dark shadow of how society perceives the ability of people with higher support needs. I am tired of reading the assumption all disabled people are on the bread line, miserable and waiting for either government or charity to spoon-feed them, controlling their every move on an assumption they have no capability of being responsible.

We must remember that even if the media and the welfare activists were accurately representing the voice of people receiving ESA, which is unlikely, there are over 80% of disabled people, with a diverse range of backgrounds, employment statuses, needs, desires and opinions, who are not getting a voice because disability is being framed just as a welfare issue.

In the ideal world, we would not talk about disability issues on a political level because the issues we have would have been dissolved into other issues as our place in society is normalised. But we are a long way off from that and so it is important we attempt to frame disability as a multidimensional issue that overlaps all issues of society, humanity and citizenship. In the words of Captain Kirk, disability should boldly go where it has never gone before, creating inclusion everywhere and in everything.

The way disabled people are supported financially and in other ways, which we currently perceive as welfare, will always be an issue although maybe not always a hot potato, but it does not have to be the issue that defines us, as we are far more than a weekly amount of income, and it is time we were framed as whole people and citizens with the same rights and responsibilities as anyone else.

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Review:ReadWrite Gold for Mac


ReadWrite Gold is potentially a very powerful collection of tools to assist people with language difficulties to improve their read and writing while on the go, working with apps like Microsoft Word. However, the software is badly let down by its primitive 1990s style interface, which is very off-putting and makes the app feel like a total stranger to the elegance expected of OS X Yosemite apps. The icons do not reflect current norms, and it makes a clumsy use of windows, making the application very user unfriendly.
However, it does have some redeeming features including a good dictionary with a powerful thesaurus although a limited amount of words, as it did not have ‘wetsuit’ for example. I also liked the picture dictionary and the fact the dictionary and other windows automatically updated as you typed. The word prediction feature was basic and clumsy to use. It has many other features that are potentially very powerful and again let down by its poor interface.
Overall, while the features may warrant its heavy price tag, the application’s interface needs a major facelift to avoid it looking like fool’s gold! It is hard to fully appreciate its features simply due to the disappointing interface.
Rating: 50%

– If you like what I say, have a look at my website at http://www.simonstevens.com or follow me on twitter, @simonstevens74

Review: iReadWrite

iReadWrite is a neat word processor app for the iPad with powerful speech and word prediction capabilities. For people with speech or language difficulties, these makes a simple communication aid that is quick and simple to use. The word prediction side bar offers a seamlessly unlimited list of words that can be swiped onto the document as well as touched to speak aloud. The app also has a good spell checker and it has the option to storing documents on Dropbox, allowing them to by synced with the software on other iPads, although not desktop devices, as well as the usual sharing options.

The downside to the app is that it only comes with two voices, one of each gender, and I see no option to add more. The app offers no formatting options at all (eg Bold, Italic or Underline) or any option to change the font or its size, limiting its accessibility to many users. It is therefore a text processor as opposed to anything else.
Overall, the app is great if you want a fast way of typing text on an iPad to be sent to other apps or read out, especially in combination with the many keyboards with word prediction now available on iOS 8, but this is not a word processor.  
Rating: 70%

Website: http://www.texthelp.com/north-america/ireadwrite

– If you like what I say, have a look at my website at http://www.simonstevens.com or follow me on twitter, @simonstevens74

30 years of Independent Living

On Thursday, Spectrum CIL (previously Southampton Centre for Independent Living) will celebrate its 30th anniversary, and I am delighted to be one of the guest speakers. This has given me an opportunity to ponder the achievements within independent living over the last 30 years.

30 years ago I was just 10 years old and a pupil at the nearest ‘physically handicapped’ unit attached to a mainstream school. My natural ambition had been duly recognised and I did a lot of studying at my own higher pace to other pupils, oddly from American textbooks and Maths questions from Countdown! The foundations to go to mainstream school were being laid down, which was a very big thing for everyone at this time.

It can be argued that over my next 30 years, I directly benefited from the advances in the liberation of disabled people and the growth of independent living in terms of all 12 of my needs. Independent Living is far more than not living in residential care or having a personal assistant, although it is indeed helpful. For me, independent living is about inclusion, self-autonomy and the ability to take responsibility as a true citizen.

I fear the last point is not taken seriously by a lot of disabled people, especially in the last few years, which has empowered a welfare lobby to frame disabled people as vulnerable recipients of state charity. This is clearly not helpful and while independent living is strong as ever on the ground, the politicians with influence have lost the message. I feel the older generation of disabled people in terms of experience have a duty to be a beacon in supporting the newer generation about the social model and the power of independent living, so it can continue to grow.

I always been an optimist, probably a coping mechanism I have always needed, and so I feel emotionally rich when I see what has been achieved over the last 30 years. I can now use every bus in my home city of Coventry as a wheelchair user, where 30 years ago this was impossible. I am now holding technology in my hand that can do more than what could ever be imagined possible in 1984. With the internet, my lifelong semi-serious ambition of world domination is actually possible in many ways, even if it is not obvious, but my point is technology has given me a voice, one of many voices, in a way we now take for granted.

While I was too young to be at the start of the independent living movement, I am proud to know many of those who were there like John Evans and Jane Campbell, and hopefully consider them friends, even when we don’t always agree on issues. I have been a part of the generation of change, opening doors and fighting battles in the hope those who come after me will not have to. Sadly this is not always how it works, and I feel the current problems myself and others are experiencing with Access to Work shows sometimes we can risk going backwards.

I have found securing independent living, with all the organisations an individual may need to work with to do this, is very much like a game of Snakes and Ladders. For years you may have a great support system in place and then suddenly something goes wrong and you end up back down at the start because of a change of circumstances, a changeover of organisation’s staff, or a policy change. When for many of us, our independent living is a lifetime commitment without pay or holidays, and I have hopefully another 40 years to go, we need to make it future proof, and government policy is currently a long way from being that.

In conclusion, it is great to be celebrating what the independent living movement has achieved in the last 30 years, and I look forward to talking in 2044 about what has been achieved in the last 60 years.

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