Professionals in the field, whether they’re disabled or not, agree that grieving function loss over time is a fluid and important experience that not all medical or therapeutic practitioners know how to support.
The First Step is Acknowledgment
Harrison Orpe, BA, MC, is a registered provisional psychologist in Calgary, Alberta, Canada. His graduate research, conducted at the City University of Seattle, looked at the qualitative mental health impact of spinal cord injuries and the lack of support available. As a professional with a disability, he says that he views the grieving of function as an additive event. “It’s a cumulative bill, if you will, in my personal opinion, that builds up and results in the same kind of loss, but it just builds up slowly over time.” That acknowledgment, he says, is key and he finds that disabled people looking for support tend to come back to what they wish they could have done or what they used to do, even if it isn’t related to a newsworthy event, but something as common as a shift in chronic pain. “Professionally, overall, what I see with people with disabilities, it’s the ‘I wish I could’ type of thing. ‘I wish I could do this, I wish I could do that…I wish my life was like this’ or, ‘When I was like this, my life was happier. I was happier with my family.’ Things of that nature.” Orpe points to grounding techniques, alongside tools like acceptance and commitment therapy, to contextualize that grief.
Experts Are Still Learning About Disability Best Practices
One of the barriers facing disabled people getting this kind of support is in the way the medical and care professions treat those with disabilities, according to Thomas Jameson, MS, LMHC. Much of Jameson’s practice focuses on those with addictions in his Hawaii-based practice—a group that falls under the protections of the Americans with Disabilities Act. He says that, in his experience, some practitioners are unwilling to acknowledge that their disabled clients can lead their own care and have a full experience. “Depending on where the person is that there can be an experience like, ‘We don’t want you to feel any worse than you already do, so I’m going to make the assumption that you can’t handle grieving properly, so I’m going to try to ameliorate the grief experience to make it easier for you because I don’t want you to be any sadder than you already are.’ And that’s very dangerous when it comes to treating grief.” Orpe says, drawing from lived experience, that there’s often an assumption made about those with disabilities—particularly those with congenital conditions—that they are ‘used to it’ because of how long their disability has been part of their lives. “But the reality is, that it’s pretty similar to the same level of loss … I think, if a person is starting to struggle with that, you need to acknowledge it. You don’t need to say, ‘Oh, you’ll walk again, you can work hard and walk again, you can do all these things.’ You just need to stop and meet them in the moment.” For Orpe, that meeting in the moment means validating the feelings of the person, including just how painful the experience of gradual function loss can be, and giving tools that, as he told Verywell Mind, don’t just focus purely on moving on or being resilient to a fault.
Interrupting Assumptions Includes Directness
As part of his practice, Jameson often supervises or supports others on his team. He says what he tries to bring his staff back to is removing the ego from the equation and understanding that a disabled person is just as likely to have the capacity to be part of the grieving experience as a non-disabled patient. He says what he’s often trying to disrupt is a tendency to move towards toxic positivity rather than the root of the concerns people bring to an appointment. “What I’m very big about looking at is, what is our intention and how self-centered are we being about our work? And what I mean by that is, are you having a conversation with the patient and meeting them where they’re at or are you thinking that you know more as a clinician? When they’re struggling with a disability or a grief experience, this cannot be about us.” He says that if a disabled patient is feeling like their experience is being invalidated he hopes they would feel confident enough and safe enough to speak up, giving an example of what that might sound like. “You know what, I’m not really comfortable with the way this is being set up, because I feel like you’re judging that I can’t handle this, or you believe that you know what emotions I’m experiencing and how I should be feeling about this. And that feels like a label and that feels like you know more than I do and I’m not real comfortable with that."
