Research is the preserve of intellectuals, people who did too well at their a levels, people who did not want to leave university and enter the ‘real world’ once their degree was over.
Researchers are dusty out of touch people, stuck with their noses in books, disconnected from the real world, funded to do preposterous things like count how many eye lashes we lose in a day, or state the bloomin’ obvious at great expense.
People with profound intellectual and multiple disabilities are currently excluded from research, and what does it matter? It has nothing to do with them any way….or does it?
Research provides the evidence for evidenced based practice.
You wouldn’t want to pop a pill that hadn’t been thoroughly tested, likewise when decisions are made in your life, whether by you or by others, you want them made for good reasons. People with profound intellectual and multiple disabilities deserve evidenced based practice as much as the next person, so research is relevant to them. It might be relevant, but does it need them in it?
If I said I was going to do research about black people, but was not going to include any black people in my work, or research about gay experiences, without including any gay people, or….you get the idea.
It is common sense that research about a particular population should include that population. But maybe people with profound intellectual and multiple disabilities are the exception to this rule, after all if you are interviewing someone from a particular population demographic you can ask them about their experience, and they can tell you, people with profound intellectual disabilities cannot do that, so they cannot be included in research.
But concluding that people are hard to include is not the same as concluding that they should not be included; that they do not belong; that these processes do not effect their lives. For a recent galling example we can consider the do not resuscitate orders that were automatically placed on the medical records of people with learning disabilities during the COVID19 pandemic.
That decision will have been made based on an understanding of what makes a good life, what makes a life worthwhile, that understanding is based on an underpinning philosophy.
All of our decisions have their foundations in a philosophy somewhere or other, whether we know what those philosophies are or not.
Picking through our philosophical foundations, as I am required to do in my studies, can help us to recognise what we are basing our decisions on, and then we can decide whether we want these foundations or whether we might wish to switch.
To give an example, in the Western world we tend to value independence over other concepts – which leads us to doing things like striving to promote independence at every level, where as other thought traditions value interdependence, recognising that we all exist as a part of a community, a family, a world, valuing interdependence over independence leads to the promotion of collaborative acts rather than independent acts.
I could go on expressing how people are made vulnerable through their exclusion from research, people with profound intellectual and multiple disabilities are among the most excluded from research, and I am sure you can think of other populations who have missed out too, but…. It is not just about how they are missing out, we are missing out too.
If you have worked with people with profound intellectual and multiple disabilities, or if you have loved ones with profound intellectual and multiple disabilities then I am willing to bet you have heard someone say “they have taught me more than I have taught them” or “I have learned so much from them”.
They cannot reason, they might not be able to remember, they do not have access to standardised forms of communication, but their lives hold meaning.
Meaning that is about more than memory, and talking. In my undergraduate philosophy degree when I read philosophers discussing what makes a human human some would mention people with intellectual disabilities as exceptions, those of us who can think are human and those other people are more like animals.
Happily now in my doctoral studies I read philosophers saying the opposite, these people are not exceptions to humanity, they are essentially human, and if we want to understand the human experience, for our own sakes as well as for theirs, then they should be included in that endeavour.