In seeking to treat all people with the same level of care and compassion, is it right to expect an equal outcome from all?
Let me explain why I ask this, with an example from my own life. I live in shared supported accommodation. I am severely physically disabled and my morning routine can take up to two and a half hours: considering I need assistance when I shower, sh_t and shave. I visited another facility (which was under the same service provider), where I was hoping to move, but my thoughts of moving soon disappeared when I was abruptly told that my morning routine must be completed within 45 minutes. That was not a good start to what, in other respects, was a rather pleasant day. Just what was this person meaning – all my morning routines must be done and dusted in 45 minutes? Really? Were I to submit to such deplorable treatment, I certainly would be signing on to what would be some pretty stark unequal outcomes.
Of course, it is a fact that there are an infinite number of disabilities and the people dealing with these require different forms of help; some of them will require more help than others. This standardised practice of ensuring every single resident’s morning routine is completed within 45 minutes, does not by any means take this into consideration.
I live with an ongoing sense that in the current economic climate, budgetary restrictions on disability services creates an outrageous need to protect the economic viability of the “service provider”. Within the disability sector this has created the enforcement of abstract efficiencies, as seen below.
Let me explain this with a quote from my article for John Menadue’s blog titled The Standardization of Services for People with Disabilities,
“There are many residents, perhaps an overwhelming majority of up to 80%, in supported accommodation with some form of intellectual disability. Therefore, it can be expected that in shared support accommodation like the place where I reside, that a policy of taking on such high demand people will simply result in a standardization of disability care for many service providers. And don’t get me wrong. Such people are also my neighbors and deserve proper care. But by putting all disability together in one facility, even if there are different classifications on paper in a provider’s policy documents, there will be an inevitable drive toward standardized care and abstract efficiency, that may allow the provider to continue its “service provision” rather than actually looking to the individual care of people with disabilities.”
To begin with: why do we use the term disability? The way I see it, it is used to very conveniently lump together hugely varying human disadvantages usually of physiological-bodily character.
On its own “disability” poses a huge reaction. Let’s keep in mind that all human reactions are also huge so reactions by the “non-disabled” to someone’s disability also vary widely. So why do we stereotype, stigmatize and disutilitize disabilities, and put them all in one “disability” basket. All people have different sets of skills and capacities that then create outcomes as wide as the human species itself.
In an article on my blog in 2017, I wrote:
“the last eight years in shared support accommodation has persistently demonstrated the consistent misunderstanding [by my “service providers”] of my speech and disability; this problem has reached a devastating point. I acknowledge that it will not be easy to provide care for me. I am in the later stages of Friedreich’s Ataxia, but I have demonstrated an outstanding IQ that has meant I have will continue to develop my communication methods to lead to improvement as I harness useful communication technology. Of course self-interest goes hand in hand with communication technology. However, I often feel my true contribution is still hindered. Why do workers in the disability sector fail to see the big picture concerning people with severe disabilities, people with high support needs? Instead of understanding our true needs, they focus on pursuing the self-interested actions of capitalism.” (slightly amended comment)
To ask this question and to seek an answer to this problem is to be disgusted by the current state of affairs. I will acknowledge that at the start of such an investigation, I am in danger of allowing my response to be overly individualistic, putting my self-interest as the person to be cared for over the self-interest of the worker, my supposed carer. But as I go on in this investigation I wish to show that this disgust and what it means in the context of care-less care, refers to systemic failures within the disability sector. At this point the “disability sector” is a part of the labour force and as such makes a contribution for which I, too, as a member of this society – quite apart from my FA “disability” – retain responsibility.
The following are what I believe are four key factors in the promotion of a sustainable disability sector. These are pragmatism, altruism, passion and empathy. These factors need to be affirmed in ongoing positive action if a workable disability sector is to provide the service it is set up to provide.
We need to look beyond one size fits all theory and be open and honest about our plans for the future. An individualized form of practical thinking is a high priority in today’s disability sector. That is, when looking to assist people with severe disabilities like myself, there is and should be a high demand for such pragmatic thinkers.
I discuss altruism by aligning my affirmations with moral philosopher Adam Smith (1723–1790) who is known for his later publication in economics. In his book The Theory of Moral Sentiments (1759) he refers to self-interest, but it is important to note that he is actually focused on how the morality of the common good is promoted when a job is performed with self-interested passion, leading not only to the advantage of the worker but also to those served. In this sense, altruism is better understood as the effects of self-interest, not selfishness. According to Smith:
“It is not from the benevolence of the butcher, the brewer, or the baker, that we expect our dinner, but from their regard to their own interest… We address ourselves. Not to their humanity but to their self-love, and never talk to them of our own necessities but of their advantages.”
Altruism is closely aligned to selflessness which will give us a better understanding of how it will work with the disability sector. It is a much needed principle within the disability sector.
Passion refers to our need to desire to act, seeking to achieve our goals. Usually, judging on my own principle disability support worker for a client like myself, they must be extremely passionate. That is, as my needs change, my supports will also change. This means that my “support worker” is one attuned to my changing needs for support.
Empathy is the ability to put yourself in another person’s position. True empathy is always found from discovering the true goals of the person with severe disabilities. To discover those goals, a support worker is then more able to judge the cared-for person’s thoughts, feelings and actions and provide the best care possible.
I talk about social issues and disability in my book, 6 and a ½ Years on a Dunghill: Life in Specialist Disability Accommodation.
You can also order directly from me.
Many thanks to my friend and colleague Bruce Wearne, who has inspired me greatly in all my work and who has been my prolific ghost writer, my gratitude also extends to my phenomenal team of academic support workers. Firstly, team leader whose brilliance and courteous behavior has been a surmountable addition to my work, Christina Irugalbandara whose work means so much to me and Daniella De Bruin whose brilliant and caring nature means so much to me. Also, Ikemi Ivara whose ability to command and control the situation with kindness. Lastly but definitely not least Mercy Ndegwa who’s continually teaching me how to be a better person.