I have been watching Humans on Channel 4, and the potential impact the idea of consumer focused ‘synthetics’, with great interest. If we ignore the storyline, I am really interested on how they would improve, or perhaps harm, the lives of disabled people, especially those of us who employ personal assistants to support us to live independently.

A synthetic would be the first viable alternative to employing personal assistants, and it is indeed an attractive offer. The greatest challenge to employing personal assistants is the interpersonal skills required to manage their emotional responses to this very intimate type of work, which is as much like a marriage as it is a working relationship. Having a synthetic, who can not get upset, bored or annoyed, is a very tempting quality to have, and I would be very interested in road testing one out.

It would need to be the right kind of synthetic, I would prefer a sexy Sam, yes the male one, as opposed to a strict Hilda. And here is where reality creeps in. Assuming I can not afford to purchase Sam as someone on a low income, and I am asking the state to give me one instead of the funding to employ a personal assistant, what criteria and restrictions will be placed on the synthetic? Government ministers would not miss the opportunity to have the ultimate machine to help them in their battle to avoid unnecessary hospital admissions, obesity, diabetes and so on.

Would having synthetics make it too easy for local councils to doll them out like sweets to everyone, regardless of the level of assistance that is required? Could this make people lazy and more dependent than they were before having a synthetic? Will a synthetic follow the orders of it users or will users find themselves slaves to their synthetics, telling them how they should live? Knowing how national and local government works, I think the latter is more likely on the NHS and social care models, where true independent living is only afforded to those who can afford their own synthetics.

I always said I would not consider a support dog, instead of a personal assistant, until they can cook my breakfast and drive my car, when I had one. A synthetic would, on paper, be able to do what my current personal assistants can do, and probably more, but I think after the novelty has worn off, I would be left with a gap in terms of meeting my emotional needs.

Do I really want someone or something that would simply agree with what I say, because they are programmed to, as oppose to having any emotional investment in the subject matter? Will I miss having a real person supporting me, who is able to read and understand my emotions in the context of their own? Would having something I can swear, scream and shout at all day, without any reaction or come back, somehow make me become a crueller person as interpersonal skills become less relevant?

The Humans series is a simple but fascinating story that really challenges the notion of personhood as it has explored the issues and impact in depth, including the impact on social care. I am unsure if synthetics will be the future as it is not as cost effective as progressing other technologies. I know technology has and will always have an important role in the liberation of disabled people, as I have experienced first hand myself, but I think we will never know how, like we will discover with the progression of wearables, like my Apple Watch.

If I was offered a synthetic tomorrow, I am unsure the geek inside me could refuse.

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A question I am often asked is ‘Who looks after you?’, to which my reply is always and simply ‘Me!’. There is this idea that just because I am ‘disabled’, that there is presumably someone in the government, locally or nationally, managing my every move to ensure I am kept safe in a form of social warehousing!

It is true that I am a service user, in that I require the assistance of many government services and funding streams, but this is no different to any other citizen in this country. But I frame myself as a user, and not a passive recipient in the way many people frame the term ‘service user’. I understand, or perhaps rather work on the basis, that you need to fight to receive anything worthwhile in life, and that government services, like any service, should never be fully trusted to deliver what I need and want first time, not without a polite incentive as I kick their butts with a smile.

I often despair when I hear disabled people say “I want to work but the government is not doing enough to get me a job”! Disabled people are not baby chicks chirping in hunger until Mother government feeds them, even chewing their food for them. From my perspective, I see many people with high support needs have the motivation to lead independent lives as far as circumstances allows them, including making a meaningful contribution to society. At the same time, I see people with health conditions, some they appear to self-diagnose themselves, like having anxiety, who seem to use their understanding of the term, disability, as an excuse, sorry, I should say reason, to claim they unable to help themselves, and require the government to help them, but only in the way they have specified, because “they are disabled and have rights”.

The term disability has had a good outing, compared to its previous core term of handicapped, but it is now meaningless. There is not a new term to replace disability because the concept of disability has been so corrupted, I am now almost embarrassed to use it. I have an impairment, cerebral palsy, as well as other impairments, and I have high support needs, but I am unsure if I am disabled anymore.

The term disability has been turned, I believe, into the new term for poverty by welfare and other activists, where the only solution they are willing to understand in terms of overcoming disability, is money and support on their terms, not the government’s. This demand for help from the government, but refusal to take it if it’s the wrong colour, is bizarre. The fact that ‘human rights’ is used to justify framing disability as a form of poverty the government must solve, has played into the Tory’s hands, as they continue to misuse human rights for their welfare agenda.

The real help many sick and disabled people need right now is to be enabled and empowered to understand they are not the property of the government, and they must learn to engage with services as partners, with a level of healthy distrust and understanding that life is generally unfair for everyone, so having to fight for almost everything is the norm. This does not mean we should stop fighting for a better world, but neither should we sit at home simply complaining until the world is perfect, as that is never going to happen.

I refuse to be just a number and a prisoner of the government just because ‘I am disabled’, and my attitude makes me a free person. I merely want other sick and disabled people to escape the chains they have chosen for themselves, and become free to see their full potential as real users of services.

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Now the Independent Living Fund has closed, I would be foolish if I did not say I was not a little nervous about the future of my support, but I have and will always be nervous about any assessment, because they all have an element of uncertainty even when there is little to worry about. I also understand any change leads to concern, and it is important to stay calm, and stick with the facts, as no news is good news.

It is however apparent that many disabled activists do not share my ‘don’t panic’ approach, as for the last few years they have spread endless misinformation about the fund’s closure. If you believe the newspapers, I should now be living in a 1960s style residential institution where I am guaranteed to be abused, or as the Telegraph just recently described, getting help a few minutes at a time throughout the day from incompetent care workers. The likelihood of either situation coming true is near to zero, and I will eat my helmet if it does!

I believe there is a deliberate campaign to ensure the transfer of fund either fails or is seen to fail. We are not just talking about the militant activists, who managed to get away with storming parliament, an act of terrorism, because the police appear to regard them as harmless children, but also leading academics and even members of parliament. I am saddened by Tom Shakespeare’s premature and heavily bias published research on the closure, a week before it actually closed, based on the ‘viewpoints’ of 12 carefully selected users, which paints a picture of distress and incompetence.

Why is public money allowed to be use to attack the government, turning the transfer into a platform for socialist rhetoric, when no one is actually helping users on the ground to navigate the transfer? I once again stand by my claim that I am involved in the one and only service prepared to help users, ILF Assist, which has not received any funding, support or recognition from any of the many government over-funded ‘user led’ organisations that appear to want and need to cause distress in this area.

I am formally suggesting in this article that there is a systematic campaign to cause distress to ILF users, through deliberate misinformation and scaremongering, where their victory is measured in the number of suicides they can cause, which they can blame on the ‘heartless’ government. None of these activists appear to be interested to support users with understanding how social care work, and how to keep the support they need. Instead, the message is the transfer has failed before it has started, and ILF users deserve red carpet treatment in preference to any other users, and maybe should not even be properly assessed indefinitely.

While I had indeed benefited from the middle class elitism the fund offered, I hope I am less selfish than those who have acted like spoilt brats with their recent campaigning, that appears to be continuing on a never ending basis for the foreseeable future. I also know that ‘independent living’ is being used to justify how the funds have been used by parents and others in a manner that may be seen as abusive, a side of the story that is still waiting to be told as the next scandal for the public to act surprised about.

It saddens me that to ensure the success of the transfer for every user involved, I have to fight against disabled activists, who seem desperate to cause as much misery and distress as they can to make themselves and their rhetoric heard. Where and when did all this go so horribly wrong?

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