Not About Us, Still Without Us
What Happens When Engagement Invites Voices but Filters Power
This is for those exhausted by engagement, and for those who believe they are doing it well.
In my last post, we talked about the silent, daily erosion of microaggressions, those tiny cuts that drain our energy before we even get to the meeting. That feeling of arriving already exhausted to advocate for access that should be a given.
In this post, I need to talk about what happens when that exhaustion meets systemic indifference. It leads to a choice: why do I keep showing up for a system that consistently excludes me, while claiming it needs me?
For over 30 years, my opinions and voice have been asked for. I remember being a teenager in the era when deaf people had social workers and were asked for our views of services. We spoke, but little to nothing changed. That early perception, that my voice was a token, not a catalyst, fed my persistent drive to make a difference.
I sought facts. I undertook research for NHS and Social Care Commissioners. I completed a Master’s in Social Research at the University of Leeds, focusing specifically on disability research.
I have lived by the maxim: “Not about us, without us.” It’s a powerful slogan. But what does it actually mean, and what is happening in practice?
What I see now is a proliferation of 'engagement', 'patient and public involvement' and 'coproduction' activities that look uncomfortably like a return to opinion-seeking, repackaged in modern jargon.
The Empty Promise of 'Engagement'
My current experiences across multiple domains, as a deaf and visually impaired person, a military spouse, an adoptive parent, and a health research expert, reveal a consistent and troubling pattern of exclusion.
Consider the messages many of us receive when trying to contribute.
'You choose whether you contribute or not.'
This sounds neutral, even empowering. In reality, it places the entire burden of success or failure on the individual. If nothing changes, or if harm occurs, the implication is that the responsibility lies with the person who chose to share, not with the system that failed to act.
The message is clear: your experiences and oppression can remain internalised, or you can share them, but any disappointment when nothing is achieved is yours alone to carry.
In plain terms: this ignores the cumulative emotional cost of repeated non-impact. It fails to recognise internalised oppression and reinforces epistemic erosion: the gradual decay of trust in established knowledge, expertise, and shared facts, leading to societal difficulty in agreeing on reality, especially concerning complex issues. There is a gradual undermining of a person’s knowledge, credibility, and testimony. It strips engagement of its relational and emotional ecology and treats lived experience as a disposable input rather than a human exchange.
In my last post, we talked about the silent, daily erosion of microaggressions, those tiny cuts that drain our energy before we even get to the meeting. That feeling of arriving already exhausted to advocate for access that should be a given.
In this post, I need to talk about what happens when that exhaustion meets systemic indifference. It leads to a choice: why do I keep showing up for a system that consistently excludes me, while claiming it needs me?
For over 30 years, my opinions and voice have been asked for. I remember being a teenager in the era when deaf people had social workers and were asked for our views of services. We spoke, but little to nothing changed. That early perception, that my voice was a token, not a catalyst, fed my persistent drive to make a difference.
I sought facts. I undertook research for NHS and Social Care Commissioners. I completed a Master’s in Social Research at the University of Leeds, focusing specifically on disability research.
I have lived by the maxim: “Not about us, without us.” It’s a powerful slogan. But what does it actually mean, and what is happening in practice?
What I see now is a proliferation of 'engagement', 'patient and public involvement' and 'coproduction' activities that look uncomfortably like a return to opinion-seeking, repackaged in modern jargon.
The Empty Promise of 'Engagement'
My current experiences across multiple domains, as a deaf and visually impaired person, a military spouse, an adoptive parent, and a health research expert, reveal a consistent and troubling pattern of exclusion.
Consider the messages many of us receive when trying to contribute.
'You choose whether you contribute or not.'
This sounds neutral, even empowering. In reality, it places the entire burden of success or failure on the individual. If nothing changes, or if harm occurs, the implication is that the responsibility lies with the person who chose to share, not with the system that failed to act.
The message is clear: your experiences and oppression can remain internalised, or you can share them, but any disappointment when nothing is achieved is yours alone to carry.
In plain terms: this ignores the cumulative emotional cost of repeated non-impact. It fails to recognise internalised oppression and reinforces epistemic erosion: the gradual decay of trust in established knowledge, expertise, and shared facts, leading to societal difficulty in agreeing on reality, especially concerning complex issues. There is a gradual undermining of a person’s knowledge, credibility, and testimony. It strips engagement of its relational and emotional ecology and treats lived experience as a disposable input rather than a human exchange.
'I apologise, we haven’t sorted out the communication for this event, you can’t attend.'
This is the real-world consequence of inaccessible planning.
The message: you cannot be part of the group today. For the organisers, this may feel like a regrettable administrative slip. For the person excluded, it mirrors a lifetime of systemic barriers. It is not a blip: it is a repetition. Quite simply: ‘you are not one of us’.
'This has been approved higher up.'
Often delivered after weeks or months of consultation, but when someone with lived experience spots gaps and flaws in the product and gives feedback, this is a defensive rebuttal.
The message: your thoughtful contribution is not valid because the real decisions were always elsewhere. The door appears open, but the lock was turned long ago.
When voices are invited but power and presence are denied, engagement is fundamentally unsafe and ethically flawed.
Standards of Care, Safety, and Accountability
My recent involvement in local health projects highlight a stark example. I was excluded from 4 out of 5 meetings or events where I sought to understand new designs and contribute my expertise.
That represents an 80% failure rate.
This is not about technical equivalence with clinical procedures. It is about standards of care, safety, and accountability. In any other area of healthcare or public service, an 80% failure to include the relevant expertise would raise immediate concern. It would prompt review, learning, and corrective action.
Yet within 'lived experience' engagement, an area supposedly built on trust, ethics, and partnership, this level of exclusion is treated as acceptable.
What makes this more troubling is that I continue to receive updates describing the meetings I was excluded from as 'good' or 'successful.'
I did not think they were successful. I was not able to attend or be included.
When one person, or their expertise is excluded, decisions are weaker. When trust is eroded, future engagement collapses. A process cannot be called successful if it systematically filters out the very voices it claims to value.
For a detailed account of how one of these earlier exclusions unfolded, and the hidden costs of inaccessible planning, I’ve written more here: Stuck Outside the Gate: The Hidden Costs of Inaccessible Engagement.
This is the real-world consequence of inaccessible planning.
The message: you cannot be part of the group today. For the organisers, this may feel like a regrettable administrative slip. For the person excluded, it mirrors a lifetime of systemic barriers. It is not a blip: it is a repetition. Quite simply: ‘you are not one of us’.
'This has been approved higher up.'
Often delivered after weeks or months of consultation, but when someone with lived experience spots gaps and flaws in the product and gives feedback, this is a defensive rebuttal.
The message: your thoughtful contribution is not valid because the real decisions were always elsewhere. The door appears open, but the lock was turned long ago.
When voices are invited but power and presence are denied, engagement is fundamentally unsafe and ethically flawed.
Standards of Care, Safety, and Accountability
My recent involvement in local health projects highlight a stark example. I was excluded from 4 out of 5 meetings or events where I sought to understand new designs and contribute my expertise.
That represents an 80% failure rate.
This is not about technical equivalence with clinical procedures. It is about standards of care, safety, and accountability. In any other area of healthcare or public service, an 80% failure to include the relevant expertise would raise immediate concern. It would prompt review, learning, and corrective action.
Yet within 'lived experience' engagement, an area supposedly built on trust, ethics, and partnership, this level of exclusion is treated as acceptable.
What makes this more troubling is that I continue to receive updates describing the meetings I was excluded from as 'good' or 'successful.'
I did not think they were successful. I was not able to attend or be included.
When one person, or their expertise is excluded, decisions are weaker. When trust is eroded, future engagement collapses. A process cannot be called successful if it systematically filters out the very voices it claims to value.
For a detailed account of how one of these earlier exclusions unfolded, and the hidden costs of inaccessible planning, I’ve written more here: Stuck Outside the Gate: The Hidden Costs of Inaccessible Engagement.
Reclaiming My Energy and Redefining Impact
So why a change?
I am changing my involvement because I have recognised a hard truth: my drive to make a difference must be met by a system willing and able to receive it. My time, expertise, and emotional energy are too valuable to be spent repeatedly proving my right to be in the room.
Stepping back from certain forms of tokenistic engagement is not giving up. It is a compassionate act of self-respect and strategic redirection. It is about reclaiming energy and investing it where genuine partnership and meaningful change are possible.
My focus is shifting toward proactive, systemic work: training professionals, lived-experience practitioners, and researchers to build safer, more compassionate, and more ethical participation as a baseline, not an aspiration. We need to teach relational practice, recognise cumulative harm, and acknowledge the internalised burdens the current system consistently ignores.
To anyone feeling drained by the same pattern: your experience is not a resource for others to extract. It is the foundation of your power. You have the right to choose when, how, and for whom you share it and the process should acknowledge the vulnerability it takes to share this without any promise it can be changed. Where possible it should look to support you and be creative in the process. You are justified in prioritising your well-being over a broken system’s demand for superficial 'engagement.'
The movement, and system, needs your voice, but it needs you healthy, protected, and whole.
So why a change?
I am changing my involvement because I have recognised a hard truth: my drive to make a difference must be met by a system willing and able to receive it. My time, expertise, and emotional energy are too valuable to be spent repeatedly proving my right to be in the room.
Stepping back from certain forms of tokenistic engagement is not giving up. It is a compassionate act of self-respect and strategic redirection. It is about reclaiming energy and investing it where genuine partnership and meaningful change are possible.
My focus is shifting toward proactive, systemic work: training professionals, lived-experience practitioners, and researchers to build safer, more compassionate, and more ethical participation as a baseline, not an aspiration. We need to teach relational practice, recognise cumulative harm, and acknowledge the internalised burdens the current system consistently ignores.
To anyone feeling drained by the same pattern: your experience is not a resource for others to extract. It is the foundation of your power. You have the right to choose when, how, and for whom you share it and the process should acknowledge the vulnerability it takes to share this without any promise it can be changed. Where possible it should look to support you and be creative in the process. You are justified in prioritising your well-being over a broken system’s demand for superficial 'engagement.'
The movement, and system, needs your voice, but it needs you healthy, protected, and whole.
#deaf #deafblind #disability #coproduction