“Support workers are not friends”: Enabler or barrier in the lives of people with PIMD

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)

8 thoughts on ““Support workers are not friends”: Enabler or barrier in the lives of people with PIMD

    • Yes. The bonds are entirely different from what would be expected between an accountant or hairdresser or psychologist, but this seems to be the professional distance that relationships are being benchmarked on…

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  1. Thanks Sheridan. This is a really important topic and the most important thing is that I don’t think its ok for any systems or services to determine what is and isn’t a friendship – thats up to the individuals concerned. If I choose to have a friendship, for example, with a paid support in my life e.g. my hairdresser, thats my business, not anyone else’s. The nature of most work with people with disabilities is such that it is inevitable that close relationships form. Personally, I want my son’s support workers to not only be friends but to become part of our family. It is so invasive to have people in your life and home and I need people around him who we absolutely trust and can be ourselves with. My son’s staff often come on holidays with us and have close relationships with other people in our family and community. We tend to retain staff for years at a time so there is time to develop that kind of bond, and people tend to stay in his life after they stop working with him.

    I do think we need some guidelines just from the point of view of making sure people with disability understand the difference between ‘worker’ and ‘friend’. The power dynamic is different in an employment relationship to a friendship one and those expectations need to be clear. For example when a worker is in a paid role, my son dictates what happens – e.g. what movie they see, and who with. In a friendship my son needs to understand that this is negotiated and that he needs to attend to some of the needs of his friend. In the work I do, we are careful to explain that and also to have a clear pathway for paid workers who develop a friendship to be able to express that friendship in ways that work for them. In our community workers can say they are friends if they are spending unpaid time with the person or going over and above their paid role. For example a paid worker might choose to spend time with the person past their paid hours, or one of my son’s workers would make healthy treats for him in her own time. For something to be a real friendship, I do think there needs to be a voluntary component and the chance the relationship will endure after the paid role finishes. We always make sure there are ways for workers to become part of the life of the person if that kind of bond develops.

    I know this is probably a different context to the one you are talking about Sheridan – we work in highly individualised settings where the person’s life is as much as possible designed by them, and staff are employed by them. Whichever situation people are in though I agree that relationships are precious and if somebody only has paid people in their lives then we absolutely want those relationships to have the qualities of friendship. This is a profound human need. I am mortified when I hear of some agencies who stop people from working together if an ‘unprofessional’ or ‘close’ relationship has developed.

    The other thing I have observed is that when paid supports are allowed to become friends and to include the person with a disability in their own lives, families, social networks, that can open the door to more friendship and connections. Its important we get better at supporting friendships between support workers and people with disability.

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  2. Hi Sheri, Megan Mann from Sense UK did a great presentation and has a video (which I’ll try to dig out for you) on this exact topic. She interviewed many service user : staff member pairs and asked their perspectives on this and their opinions varied widely. My personal stance is that it SHOULD be in every support workers job description, that one of their job roles – no more or less important than their other duties – is to provide all clients they work with, with opportunities for frequent, sustained high quality social interactions. Given that interactions are the building blocks of relationships, I’d hope that this imperative would lead to high quality relationships – which while resembling friendships, I’d probably still view as high quality working relationships. If staff say they have a “friendship” with a client – that’s a great starting point for a conversation about reciprocity , mutuality, power, obligation, and what “friendship” means to that staff member. As you said, it needs to be a case by case situation and reflective, responsible practice is of the utmost importance.
    Great discussion point Sheri.
    Cheers,
    Merry

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    • Hi Merry,
      Thank you so much for sharing the video. I’ll try and follow up with Megan to see if she’s able to share this more widely. Although it focuses on people who use a symbolic means of communication, I think it has interesting offerings particularly around the inevitableness of a type of friendship, but a knowing of it’s boundaries.
      Do you have contact details for Megan? I noticed the Sense are doing a lot in this space.
      Cheers
      Sheri

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      • Yes, I’ll email you her email address. She and Paul Hart have done a bit of work together. It’s worth keeping an eye on the work of Sense UK. They’re pretty progressive

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  3. This is a really interesting conversation. We tend to talk about friendship as though it was one ‘thing’ that we all understand and yet we probably all could make lists of different friends who fit into different categories in terms of context and expectations. For example we may distinguish between ‘work’ friends and best friends or family friends. This is an issue that has not really been explored in the field of intellectual disability and may impact on people’s reservations in identifying as a friend. We all are at risk of letting down or being disappointed or hurt by our friends and probably have experienced this but we don’t turn away from friendship. It may be time to look at what – if anything- is the difference between a competent supportive worker and different types of friend and how this plays out in care.

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