The relationship between a person with a disability who receives personal assistance and the person who provides it is a unique and powerful relationship. It can cover a broad range of emotions for everyone involved, some positive, some not so.
The assistance relationship can potentially fall into being hierarchical—one person in control, the other feeling controlled. It could be the person with the disability as the boss, directing an employee (who could be fired) or simply being demanding and rude. It could be a family member or a hired assistant insisting on how things should be done, essentially forcing the person with the disability into a passive role. There are infinite permutations of this relationship, all with potentially profound impact on each person, but especially the person with the disability whose belief in his or her own potential can be prone to the influence of others.
The ideal and ultimate goal is to feel equal and respected in all our relationships. This is the innate desire wired into all of us. These qualities hang poignantly in the balance in the caregiving interaction.
Oops, there’s that word: “caregiver.” It’s a problem from the get-go. The implication in the very word is that someone is being “taken care of,” putting that person almost unavoidably into a passive mode—actually or psychologically. Whether you’re consciously thinking of it in this way or not, such language bores deep into the psyche. The language we use informs our very beliefs about what disability means and how far out we set our imagined limits of what is possible. It can influence everyone’s sense of how substantial the receiver’s true potential is for independence.
Optimizing independence is—or, I would urge, should be—the utmost priority in this relationship, regardless of the type or degree of disability. Rather than thinking of the “caregiving” interaction as being about taking care of someone, it is really about “assistance” and “collaboration.” These terms convey equality, shared participation, and optimizing possibilities.
Independence is not a matter of whether someone does something physically. Independence is a matter of who defines the terms. For people who need assistance with getting dressed, with clinical needs, being fed, and so on, being assisted on their terms can make the difference between being dependent on another or being out in the world doing and achieving. If one is thinking of assistance as an adaptive method, then that person is more inclined to think of using it to get out there, living and enjoying.
It’s a point of view that can be a deeply empowering foundation of a relationship of equality between giver and receiver. In the truly ideal world, everyone would see the assistance role as a means of making it possible for people receiving support to offer what they might to their families, their communities, the workplace, and humanity as a whole.
But we don’t live in an ideal world. People have a way of getting in bad moods. Communication is reliably porous, words falling through the holes of understanding as easily as gasoline through our cars. Relationships always have messy moments, no matter how much love and good intention there is in the room. We need to keep this real!
This is realistically about a process of building relationships based on respect and appreciation. It’s about learning, acceptance, forgiveness, and taking responsibility for our mistakes and weaknesses. This is a skill that every one of us needs a lifetime and more to learn. The assistance relationship has a unique way of giving us lots of opportunity to practice. It is just another way life invites us to face down the most basic lessons of our existence, gaining a deeper sense of the ways we want to be in the world with others.
Then again, some people simply have such diametric ways of seeing the world and contrary emotional and communication styles that they simply shouldn’t be in the receiver/giver relationship. If it’s not working, sometimes that means it shouldn’t be happening, as with any other type of relationship.
It could also mean that some counseling is in order. A skilled counselor or therapist can help sort out misunderstandings and facilitate finding common ground when things get piled up in assistance relationships that can’t just be terminated. Family members sometimes need some help with this stuff, and there’s no shame in that.
Both sides, giver and receiver, have a responsibility for how the assistance relationship goes. Equality works from both directions.
Far and away, the absolutely most precious thing assistance givers can offer receivers is the assurance that they get to have it the way they want it. Since givers can’t be inside receivers’ nervous systems, they can’t possibly know whether they are physically or emotionally comfortable with what is going on. The receiver needs to feel free to speak up when something is happening that is not okay for him. and he needs to trust that the giver will be open to that information. Lifting a leg at a certain angle or range can affect the leg owner’s sense of balance and security. There might be too much food on the spoon. The giver might be walking a bit too fast or slow while guiding a blind person. The list of things that some people would consider picky—but which mean a great deal to the receiver—is plenty long.
This gives the person with the disability a greater sense of having some control—a core need for a person with a disability whose life is marked by a degree of loss of control by definition. The assured freedom to give feedback and have it accepted helps counter the danger of feeling passive, surrendering to being “cared” for.
And now the other side of the formula: the receiver must give feedback respectfully, and the needs he or she expresses must be reasonable. Givers are often making sacrifices to be there, so the last thing they need is to feel bossed around or denied acknowledgment for the significance of what they are offering. No one likes feeling taken for granted. And no one is going to feel too generous while constantly being asked to turn the temperature up or down a degree 20 times a day. As the receiver’s core need is for control and receptivity, the giver’s core need is to feel appreciated and to be given appropriate tasks. That will surely keep them coming back.
Neither person may be an expert about some detail of what’s going on. Questions can arise and when they do, both persons become partners in learning, collaborators in seeking answers and support. Having once problem-solved an issue together, from then on the task evokes a reminder of your equal partnership each time it is performed.
To foster and reinforce a respectful, equal, and collaborative relationship between giver and receiver of assistance:
- Listen to each others’ view of how it feels to be in your respective roles.
- Consider together the ways that assistance expands possibilities for the person with the disability.
- Discuss details of a given task to keep getting better at what makes it easiest and most secure for both of you.
- Become good problem-solving partners.
- Make an agreement that respectful feedback is welcomed from both sides.
- Discuss freely the fact that natural, human weaknesses can create difficult moments in relationships, so you can both recognize—and forgive—when it inevitably happens.
- Express appreciation for each other every chance you get.
See Related Articles
If your partner is also your caregiver, see Preserving Intimacy: When a Partner Performs Your Personal Caregiving Needs.
For more information about caregivers getting the support they need, see Building Your Caregiving Team.
