Many years ago I wrote an article called “Age appropriateness: Enabler or barrier in the lives of people with profound intellectual and multiple disabilities”. In this article I suggested that the concept of everything having to be age appropriate was operating as a barrier in the lives of people with profound ID often: blocking people from accessing preferred activities, limiting the reasonable accommodations used, and being applied with little evidence.
Now I’m turning my head the the frequent heard comment “support workers are not your friends” and questioning whether this comment is operating as a barrier or enabler in the lives of people with profound ID.
Over the last weeks I’ve been involved in conversations about this, and observed others on Facebook. Many strongly say “support workers are not friends, they are paid”.
But I struggle with a number of things when this is applied to people with profound intellectual disabilities who have support workers in their homes or day services.
I struggle with the question of what is meant by the word friendship? If it refers to a mutually enjoyable interaction with someone, then how can we say that a friendship is not there sometimes in the paid relationship.
If we say, well if the staff member wasn’t paid they wouldn’t be there. Well, yes, many wouldn’t. But some might occasionally depending on whether the organisation “allows” it or not.
Do we say that the pay provides an permanent break in the assumptions of friendship? But what about the assumption of reciprocity; do we also say that people who can not reciprocate, call up, send a card to their “friend” are disqualified from ever achieving friendship because they they don’t have the independent capacity to do the usual rules of friendship. (Are we holding a standard for people with disabilities much higher than we would people without disabilities?)
I think of one person that I would call my friend who has a profound intellectual disability. I used to work with him, and it was there that we (speaking on his behalf tentatively) developed mutual enjoyment in his company. I sought a continued friendship after finishing working with him. I see him when I contact him – he can not initiate the contact with me. We don’t see each other a lot. But I feel we still share enjoyment in each other’s company.
Many people say that people with disabilities should have people who are unpaid and don’t have disabilities. But if I walked up to a group home and said I’m not paid, and I want to take so and so out because they’re my friend, many would treat this with mistrust. I ask the parents of people with profound ID out there: how would you feel about a “community member” wanting to have a friendship with your son or daughter? Would an organisation allow it , support it?
Many of the people that I support also have characteristics that may not win them friendships in the community. Many drool, make strange sounds, some hit themselves, strip their clothes, bite other people, and require significant care routines.
When I think about these people and the concept of friendship I wonder what hope they have if their staff are not allowed to be seen as friends.
I concede, yes it’s a paid relationship, yes they may move on. Yes it may not comply with the rules of friendships, and yes, for some people (both staff and people with ID) the boundary might need reviewing.
But my greatest worry is the nature of interactions when staff are told they are not allowed to be friends. Many people worry about staff not knowing the boundaries if they are considered friends. I worry about staff not knowing the boundaries between indifference to a person and a warm caring, mutually enjoyable relationship. I mean how exactly do you “do” not being a friend.
I worry about the social-emotional implications for the person with a disability. People develop and use their existing social-communicative skills in interactions with others. Will sitting down with the person be seen as too friend-like, and therefore be discouraged?
People with profound intellectual and multiple disabilities are frequently so isolated despite being surrounded by people. Anything that threatens to invalidate their connection with other people (in this case the support staff that are the most frequent people around) should be treated with extreme caution.
My personal opinion is that if staff choose to call the relationship a friendship then that has more potential for enhancing the person’s quality of life. Of course reflective practice and safeguards are needed. Of course, each individual needs to be considered (if a person is likely to misinterpret the relationship or develop sexual feelings). People with profound ID can be incredibly vulnerable. But are they more vulnerable when they are surrounded by people who would choose to call themselves friend?
(I’d love to hear what you think – I know this is a very sensitive topic for many people)