I am not a robot... You might be reading this and thinking that this is going to be some type of futuristic post, imaging a something that ressembles Robocop, something that continuely 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.
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 does it take 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.
That said, although I can understand it to a degree, I have one question... how would they like it if someone was coming into their home and dehumanising everything there is to know about them as a person and of their individuality. I recently heard an argument that stated that social workers can deal with these responsibilities as part of their role, only because they dehumanise their approach and in doing so they don't allow themselves to see each person they support as an individual but rather as a contributing factor to resource allocation. Needs assessements and ofen the way they are conducted often make disabled people feel like they are expected to behave like robots...What happens if a disabled person cant use the toilet on demand or has a stomach bug and needs to visit the toilet more frequently? For some disabled people they are not allocated enough time to have anything more than a microwave meal for dinner and heaven forbid that they might actually want to digest their meal before moving on to the next task that they need support with while they have their support worker with them to assist.
I am quite fortunate in that sense. Although my support hours require me to be organised so that i decide what i want support with and when, my allocated support hours do allow me to have freshly cooke meals but there is little room for flexibility in terms of what tasks im supported with and when. The Self Directed Support Scotland Act 2013 was enforced with the intention of giving disabled people and their families choice and control over their support, how they use it and who supports them.
In some areas of Scotland the Self Directed Support legislation has been implemented really successfully. In others its still very much a 'postcode lottery' in terms of the options etc disabled people and their families are given. In these situation support given is still very much based on resource allocation as opposed to the person centred approach that the national guidelines outline.
Some might try and say that its the pandemic thats to blame for
the inconsistent support disabled people and families are being offered. Theres no getting away from the fact that the pandemic had played its part in the unequal treatment of disabled people in the last year. However trust me when I say that isnt the reason that disabled people are often treated like robots. It was happening long before any of us could comprehend the challenges of living in a pandemic.
Although i don't want or need 24 hour support in the sense that i have support in my house 24/7 (that would do my head in, I wouldnt want someone here chattering away while i'm watching Corrie or Emmerdale) I do need support overnight. This is due to a choking risk due to my CP. In 2019 i contacted my local authority and asked to be allocated a social worker. I did this because after completing a leadership course, I wanted to review my self directed support budget and consider how to make it work better for me.
I had hoped that this would be regarded as a positive step by the local authority. Unfortunately it wasnt. I wasnt allocated a social worker..Well i was supposed to be but instead i was faced with someone with an agenda whose sole purpose was to try to cut my self directed support budget, not support me to explore how to make my budget and support work better for me Don't get wrong i understand that she had a job to do and that she needs to look at ways they can save any money, not just where they need to spend it. This should never be at the expense of anyones health or their safety.
However, the reality was, depending on the outcome, going to put my health and safety at risk to the point where i would never have slept for fear of choking. For 6 weeks i had 6 weeks i had motion detectors put on ever doorframe of my house, dectecting every movement in my house including when and how long i was in the toilet aswell as how often i required support during the night.
I was told by a colleague afterwards that these motion detectors should only be used to perhaps detect if/when someone with dementia is up through the night etc as it might help identify/monitor a change in their condition. They should not be used as a way of invading someones privacy timing their every move in their own home as they did for the 6 weeks i had them installed
There has to be a balance somewhere along the line in terms of what is shared about a disabled person and when as well as considering how long it takes them on a daily basis to complete the simplest of tasks... follow me on this thought journey and allow me to present a picture of others attitudes to a disabled person's life and what they see or do. For example at Hogmanay this year I decided as going out was not an option I would bring in the bells whilst watching a family friend's livestream on Youtube to bring in the bells. In all honesty I don't even stay up for the bells usually but last year I decided I would. After all it's not like we have had much to celebrate in the last year, however when I let my sleepover support know that I intended to do this, I received a response along the lines of "oh you're staying up late" to which I responded "yes I am". I didn't want to be rude but in my head I was pretty frustrated by this response. Later that evening my support advised me that I would need to let her know what I wanted done as it was "a different routine".
No it wasn't, it was the same routine I do every night, finish watching TV, go through to the toilet to brush my teeth then get into bed. My sleepover support is here all night anyway due to health risks overnight, I would totally understand if this was not the case and she had to leave when I was in bed but this is not the case. The word "routine" bothers me a lot, maybe more so because I have to rely on support. It's human nature, We all have our own routines, for example in the morning etc, but when you live with a disability some support workers seem to have the view everything must be done in a certain way at a certain time and if not this may result in further implications around an individual's support. Of course some people need that structure implemented in their support to thrive but there has to be a differentiation between those that need this and those that don't.
Several years ago when I was a teenager I had a really bad experience in terms of the support I received. Despite the time I had been assessed for and allocated, it would frequently be the case that support workers would be standing outside my bathroom door and consistently asking me if I was finished using the toilet. I don't know about you but if I'm in a situation where I feel rushed when using the toilet I wont go despite having previously had the urge to go. If this happens it defeats the purpose of relying on support. For me as a teenager this meant that I would often need to ask my dad or his partner for assistance to go to the toilet straight after my support had left. In turn this meant that it wasn't giving me much privacy if I still had to ask my dad etc for assistance regularly, and it also meant that my dad was still having to fulfil the role of being my carer as opposed to my dad on a regular basis.
Thankfully I am glad to say that this hasn't happened since then but I will be honest and admit that the strain of that situation is often in my head, especially if I am faced with getting to know new staff and build a relationship with them. More recently I have discovered that a support worker from one of my support providers have been writing my every minute detail of my support in their records down to the exact minute. Please don't misunderstand me, I totally understand that there is a requirement by law for records to be made in health and social care and i do understand that these are produced to protect both individuals receiving support and the staff supporting them. However is there any need to record that "Danielle required assistance to come out the toilet at 6.38" or exactly what I done when I used the toilet. Do people really want to know that? Think about it for a second. I understand for some these details have to be recorded for medical reasons or to help social work understand exactly what support they need. But surely there has to be a balance somewhere. it could be something as simple as simple as recording this information somewhere that is not easily accessed by everyone who supports that person. Or just by thinking how you would feel if you felt your life was being timed. Everyone is entitled to a private life and to not be treated like a robot.Why should this be any different if you have a disability and rely on support?
It’s so dehumanising 😔