I am not a robot

by Dr Danielle Farrel

My name is Dr Danielle Farrel, I am 35 years old, and I have Cerebral Palsy. I am the Managing Director of Your Options Understood (Y.O.U), a Community Interest Company based in Scotland. Providing a range of services to disabled people and the wider community including advocacy and education and training. In this article I have illustrated that contrary to popular belief, disabled people are not robots and are in fact the people that know best when it comes to voicing what they need and how they wish to be supported in order to live the life they want to lead.

You might be reading this and thinking that this is going to be some type of futuristic post, imagining something that resembles RoboCop, something that continually completes the same tasks automatically and repeatedly.

However, it's not. It's a statement that refers to how I feel at times, due to having to rely on support as a result of living with a disability and I know I'm not alone in feeling like this. A phrase that would be better used is “what do I know? I only live it!!!”

It often comes as part of the many challenges you have to deal with regularly when you have a disability. I have relied on support since the age of 14 and I've lost count of the many times I have been asked the question by a social worker along the lines of "how long does it take you to...?". This sentence has many different endings from "how long it takes you to have a shower in the morning?", "to prepare a meal?", or my absolute favourite is "how long does it take you to use the toilet?" Really? Yes, it is a reality that disabled people are asked these questions. When you have as much experience as I do around receiving support you begin to understand the systems and therefore understand social work's way of thinking when they are asking questions like these. To a degree I can ALMOST understand why they need to understand such questions.

More often than not it's not actually them asking the questions, it's the managers who are responsible for allocating budgets and part of this is in them trying to pin point areas where budgets could be cut to save them money. The questions that really should be asked of disabled people are those such as "What do you need to help you live the life you want? What are your goals and aspirations?" It is sometimes the case that non- disabled people feel they could risk causing offence if they ask a disabled person what their goals and aspirations are. This is because there is a fear that disabled people can’t have goals or aspirations for their future due to their disability. However, this couldn’t be further from the truth. Anyone with a disability, and they will tell you, they just want an ordinary life and by ordinary, I don’t mean boring. I mean a life with the same goals, opportunities, and possibilities as non-disabled people. If disabled people were asked more positive questions as opposed to questions like "how long it takes you to use the toilet?" or "do you really need support during the night?", the needs assessment process would be a much more positive one for all involved. However, in reality and in my experience the professionals carrying out these assessments take the dehumanising approach. By doing this, rather than getting to know a person, they are treating people like their disability rather than as a person. My “what do I know I only live it!!!” response was initially a sarcastic one that I would say when someone who didn’t have a disability would try to tell me how they thought that I should live my life. Now though “what do I know… I only live it!!!” has not only become my businesses tag line but also a phrase that is true for every disabled person. So rather than making assumptions or having professionals trying to make us fit into a tick box on a form ask us, we are all individual, we are not robots, we are the ones that rely on support so ask us what we need. If professionals and disabled people can start to have good conversations instead of those that focus on what someone can’t do or how long it takes them to complete daily living tasks, this would completely change the narrative for disabled people, their families and professionals involved in supporting them.

Some might argue that it’s due to the pandemic that disabled people are feeling forgotten about and not treated as equals in society, but this is not the case. This feeling has been a long-standing feeling within the disabled communities across the world. Some countries are getting better than others at addressing these concerns. In Scotland for example we have self-directed support legislation which was enforced to enable disabled people and their family’s choice and control of over their support and who provides it. This Scottish legislation also allows the individuals and families who receive it, to choose and control how they spend their support budget in the best way that meets their needs. There are other countries in the world that are also piloting initiatives such as personalised budgets that work similarly to self-directed support in their principles of offering choice and control to disabled people around their support. Scotland might be ahead of other countries in the world in terms of implementing self-directed support legislation, but this does not mean that we still don’t have a way to go before getting it right. Legislation is only a small factor in terms of changing professionals and the wider societies attitudes to disability. It is more about changing the mind set and the only way this is truly ever going to be achieved is if professionals and wider society eradicate the conscious and unconscious fear of disability that still exists and this is only going to happen if people start to talk and engage with disabled people, the people who live it and overcome the challenges and attitudes That they face every day.

Engaging with us would mean that we are no longer “us and them”. It would mean that we are no longer the people who realise that we are being timed when being supported or that daily notes stating that “Danielle asked for assistance out of the toilet at 6.38 pm” would no longer exist. Does that world not sound better? A world where disabled people like myself are no longer treated like robots but who are champions of their own support and disability.