Thank You for Including Me, Now Please Hear Me

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How much input can those with lived experience genuinely have when the traditional “experts” have the balance of power in any decision making processes? Those with lived experience often don’t have the finances, the resources, the networks or the academic credentials to be truly “heard”.

Are they really being treated with the same respect as other experts or is it still “us vs them”? Stating that you will include the voice of lived experience is not enough. To genuinely include those with lived experience, you need to remove obstacles so that their voices can be heard.

This conversation is written from the perspective of lived experience input with emergency services mental health but it will resonate with many individuals trying to generate change from a lived experience perspective. We’ve deliberately used the term “my people” to represent a consumer group needing change.

Letter to Those Trying to Make Change

You say you want to help. So you organise a forum, or a conference, or a consultation. You say you’re doing this on my behalf.

I thank you for your concern.

You gather academics, helping professionals, organisational managers, sponsor representatives and senior leaders of organisations I have worked or volunteered for.

You will make decisions on my future, and the future of all those who stand beside me. In decision making land, you have deemed these people the “experts”. I and my people are the “consumers”.

You invite me to take part, to contribute my experiences. Thank you for your willingness to include me and take a part in decisions that will affect myself and my people. Where you are grateful to the experts, I get the distinct impression that I should be grateful for this opportunity to attend.

You get paid. I do not. I will have to take the day off my paid work. You offer to reimburse my travel expenses. You don’t see the irony that this will cost me money while all others present are being paid either by the organisers or by employer they’re representing.

I have listened to my people for years. I am their shoulder, I am their venting space. I listen. They have many suggestions for change so that their people stop this unnecessary suffering. Someone has to speak on their behalf. I do this in my own time, unpaid. Yet sharing my expertise with you comes at a cost to me.

I am one voice among many at your forum. Yet I am one voice FOR many in the real world. The gathered experts report in a language almost foreign to my people about the many projects they have completed with, or are planning for my people.

I speak about the issues and am met with your silent nods and a few looks of sympathy. I feel proud that I’ve spoken on behalf of my people, advocated for their suffering to stop, made suggestions for change. Then you ask the curly question: Where is the evidence of this suffering and where is the evidence that what my people suggest will actually work? Because the evidence before them ( from the experts) suggests other alternatives.

Evidence? I have letters from my people. I have recommendations from my people. I have survey results from my people. I spend every evening on the phone, email, and social media talking to my people. I have regular face to face meetings with individuals and groups of my people. Evidence?

Was my statement of 5 people taking their own lives in ONE week not enough evidence?

I am interrupted by the senior leaders presenting evidence that their new improved programs are working well. The academics mention they would like more money to study this a little more. Practitioners need more information so that their practices can be enhanced to include my people. Special grants are mentioned which would allow their practices to accommodate the special needs of my people. Sponsor representatives talk about their agendas and the kinds of directions they could fund. Those directions are irrelevant to my people, but not one of you seems to notice.

I become agitated but take a deep breath. Appearing emotional will allow you to dismiss my input as overemotional, irrational. I summon control by envisioning all the people who have asked me to speak on their behalf.

Hear Me

I am AN EXPERT when it comes to the problems of my people. I have lived it. I have overcome it. I know the obstacles. I know the resources. I listen to my people every day. They ask me to speak on their behalf. I have no alternative agenda. I merely seek to help others of my kind.

I sit amongst academic expectations, unwillingness of senior leaders to admit issues exist, directions conversations take due to biased sponsoring stakeholders and the financial burden of maintaining advocacy of my people.

You are not allowing my people a fair opportunity to provide input to their own destiny.

You may be convinced by experts that you’re doing the right thing, but until you LISTEN to those of us affected, until you help us to be on the SAME playing field as the historically perceived “experts”, you are only creating perceived solutions – not REAL solutions.

Invite me, or someone else who genuinely represents thousands of my people to EVERY consultation which involves our destiny. Give me the respect of financial remuneration and recognition as you do with other participants and speakers deemed to be ‘experts’.

Respect my knowledge and wisdom. I should not have to spend time and money gaining a PhD just so that you all trust what I say. I should not have to accept that your sponsors guide the direction of your work with their funding, or that the academic evidence isn’t quite ready yet and probably won’t be for many years.

I should be able to speak out loud about those who still work for the services but are threatened with disciplinary action or loss of job if they partake in public action or social media statements which criticize current systems. Or about those whose injury compensation payouts are all too often dependent on a clause which stifles their ability to speak out.

I have to be more politically correct, calm and collaborative than most of you because I run the risk of exposing that deep seated belief in many who are present that my mental illness must be playing up if I get agitated or express anger and frustration at some of your practices.

I ask you to do more than listen. Hear me. Because beside me are thousands of others, just like me. Experts. Shouting out for change.

Solutions come from those who you state you wish to help. They have lived it. They know the obstacles. They have worked their way through struggle. They know the resources. They know the solutions. They have the voice. They just need to be HEARD.

Thank you for stating that we- people with lived experience- have wisdom to share. To make sure we’re genuinely included in consultations which decide our own destiny – please remove the obstacles so that you and I, and all the people beside me – can truly collaborate and make meaningful changes. Changes in the REAL world.

A Gentle Approach to Dementia for Care Providers

dementia-patient

When I first became a hospice social worker, I was stunned to realize more than half of my patients were diagnosed with advanced dementia. I had been under the assumption that I would be working with mostly people with cancer or other chronic illnesses such as Chronic Obstructive Pulmonary Disease (COPD) and Congestive Heart Failure (CHF). While many of my patients have suffered from those maladies in the latter category, the prevalence of dementia is rather high. After seven years as a social worker “in the trenches,” I would have to learn a whole new skill set if I was to survive and thrive in hospice.

Most of these patients eventually end up in nursing facilities as the burden of their care becomes too great for family members to keep them at home. In visiting such facilities, I have came to find that many more people than just those in hospice were in various stages of dementia. It is a fascinating phenomenon with several different causes, but I have developed my own way of working with these individuals based on their current level of capability to engage interpersonally. As a result, I have identify several areas of concern regarding the treatment elderly patients receive from care providers and other medical professionals.

Aside from the ways dementia affects different people on a physical level which can include the ability to ambulate, muscle contraction, etc., the mental symptoms can range from extreme forgetfulness to devastating interpersonal impairment. Some of the most pleasant conversations of my day are sincerely answering the same three questions over and over again for an hour with the same patients, but they have little to no short term memory.

I have also spent a lot of time in constant redirection and assurance with people that can no longer recognize relatives with whom they have spent the last eighty years. I have seen these individuals coddling realistic looking baby dolls as part of their care and have played music for people that are nearly catatonic, only to watch their bodies come alive with movement at the faint and automatic memory of their favorite songs, something that blessedly seems to remain long after their ability to speak has faded. I have heard ninety year old patients insist that their mother had just been to visit them or that their young children were running around the facility.

The common thread with which I approach these wounded patients is a measured gentleness that preserves their dignity and, to the greatest possible degree, facilitates their comfort in the immediate moment. For most of these people the present moment is all they have. Thus my preferred method is to redirect them in conversation and to by no means challenge their obviously factually incorrect assertions with harsh reality.

If an elderly woman whose mother has obviously passed insists that she must know when (her mother) will be visiting, I will respond that she’ll probably be around later. I have witnessed facility nurses and aides confronting such patients with the fact that their mother will not be visiting because “she’s dead,” repeating this every time the person asks. I will just as gently take such workers aside and explain that they are effectively breaking the news of the death of a patient’s loved one several times a day, each instance with its own accompanying trauma.

Another of my concerns is when I see people with dementia being treated like children because “they don’t know any better.” Almost every culture in the East has, currently or at some time in their history, had a practice of revering their elders simply for the fact they have lived longer and accrued more life experience than most.

Watching people with little wisdom earned through the kind of adversity their patients have faced treat said individuals as mere nuisances to be quieted makes me sad to say the least. I labor under the belief that my patients are people, whether they be completely lucid and able to participate in conversation or if they are unresponsive. As such, I also believe that each of these persons have the right to my full presence and attention and that, while their minds may have been rendered functionally impaired, their spirits are perfectly intact and engaging with mine. In short, I am no better than these people just because my mind is still functional.

Lastly, watching the pain endured by the family members of such patients is nearly unbearable. They faithfully and dutifully make their regular visits in the vain hope that they will see even the briefest signs of recognition in the eyes of their loved ones, only to inevitably leave disappointed and heartbroken. They deserve to know that their family members are being treated with the highest level of respect and dignity and with a kindliness and gentleness reserved for the most vulnerable amongst us.

Please keep these concerns in mind the next time you encounter a person with dementia. They are locked in a special kind of hell that I hope you and I will never have to experience.

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