All advocacy groups, even mass movements, face challenges of exclusion and elitism to varying degrees. So do we.
I contend that the problem of exclusion and marginalization in ALS advocacy is acute, and generally goes unacknowledged.
If we are going to claim to represent the ALS community in its entirety, it’s critical to come to terms with the fact that we have a “silent majority” and to devise strategies to better represent them.
What specifically is the problem? The small circle of us pALS who are active on ALS awareness campaigns, policy advocacy, and research protocol debates are drawn disproportionately from pALS who are (1) slow progression cases; (2) the professional and/or relatively wealthier sub-set of the population; and (3) American. This is an observation based on repeated participant-observation at ALS workshops and meetings, and from review of the profiles of pALS activists in ALS organizations and on social media. To be sure, people with normal progression and/or people of more modest income levels take part in our work and our meetings, and some important contributions are being made by pALS from outside the United States, but they are a small part of the activist community.
How exclusive are we as a group? I did some back-of-the envelope calculations and came up with this set of figures. First, we know that 20% of people with ALS live five years or more with the disease, and if we count that cohort as slow progressors, that gives us an 80%-20% ratio of normal progression versus slow progression cases.
As for wealth and professional status, this is trickier, but if we use $100,000 in annual household income as the threshold dividing wealthier US households from the rest (this varies according to location – you can calculate your own with this tool), we can see that roughly 30% of the US population enjoys an annual household income of $100,000 or more, and 70% fall below that figure.
I applied these percentages to the matrix below and the results are sobering.
Typology of (US) pALS activists
| Poor to average income 70% | Wealthier and/or professional class 30% | |
| Normal progression 80% | The core of the silent majority, 56% | Occasionally powerful, but short term roles 24% |
| Slow progression 20% | Modest role, mainly in social media 14% | Dominant role 6% |
The quadrant of slow progression, wealthier, typically professional pALSs from which most pALS activists come constitute just 6% of all pALS, if you accept how I defined and measured the variables. But even if you dispute the metrics I used (and I accept that they are imperfect), the general point I’m trying to make is still valid – those of us pALS who serve as representatives or opinion leaders in ALS organizations and on social media represent a very small slice of the community.
Our problem of representation gets worse when we take race and ethnicity into account. To the extent that race and ethnicity in the US are strongly associated with income levels (a correlation that has been amply demonstrated in countless studies), we should expect low levels of involvement of pALS who are also people of color. That, indeed, turns out to be the case. Meetings involving pALS are overwhelmingly white. To cite just one example, check out the 13 years of group photos of NEALS CRLI participants on the CRLI website and see if you can spot any or many people of color (For the record, this is not a criticism of CLRI! They are working with the pALS who nominate themselves).
I know that ALS occurs somewhat more frequently among Caucasians than among other ethnic groups, but even taking that into account, people of color are still quite under-represented in our ranks.
Finally, the pALS activist community is dominated by American voices to a surprising degree. It makes for a very insular conversation, one focused entirely on policy and access issues that are often of very limited relevance to the hundreds of thousands of pALS living outside the US. We do sometimes hear from pALS in more affluent countries of the world. But when it comes to PALS living in the global south, who may well outnumber the rest of us, they are almost entirely voiceless.
We are, in sum, not a very diverse group. The typical profile of a pALS activist is white, American, professional, relatively financially well off, and slow progression.
So what? Is that a problem? Not necessarily. Not if we take the time to listen and understand, and then have a commitment to represent the voices of those who lack the ability, time, resources, or desire to play a part in ALS advocacy.
But I am unconvinced that we have in fact done that work. For one thing, we lack the tools to connect with the silent majority, even those in the US. Many in the ALS community never make themselves known to the rest of us. They may be less likely to continue to attend clinics because the clinics are too far away and too hard to get to, or because they don’t see the point. They are less likely to register with the national ALS registry. They are less likely to indulge in twitter or facebook or start their own blogs. If they engage with the rest of us at all it is most likely to be on forums designed to share advice on coping with the disease. Those with fast or normal progression may simply want to spend their remaining time doing things they love with those they love, and not get bogged down in advocacy work.
We can reach this silent majority, but to do so will take a level of effort and commitment, and an active strategy of outreach, that we have not attempted to date.
Importantly, the organizations that have done the most to reach out to our silent majority (at least in the US) are the care and service outreach groups – the interdisciplinary ALS clinics supported by ALSA and MDA, the on-line support group forums, and the host of local and regional ALS support groups across the country – like Team Gleason, the Les Turner ALS Foundation, and the Joe Martin ALS Foundation. We do a better job of inclusion in our care and support outreach than we do with our advocacy. I feel much closer to the voice of the average pALS when I exchange ideas on on-line support groups like ALS Forums than when I follow ALS twitter wars or attend an ALS workshop.
The absence of voice of that silent majority matters because those of us with the combination of slow progression and more privileged backgrounds have – I contend — very different interests than the other 94%. As slow progressors, we stand a better chance of surviving long enough for therapies to be developed to stop or reverse the disease. And as more affluent pALS, we may be a bit less worried about the enormous financial impact of the disease on our families. We might, therefore, be a constituency with a far greater interest in devoting funding toward a cure than toward care services. By contrast, families with more modest means, and pALS whose progression is rapid, may be less likely to focus on advances in therapies from which they have little hope of benefiting, and may be much more likely to prioritize essential care services and support.
This is just informed speculation on my part. Only very good survey data can help us answer these questions authoritatively (Spoiler alert – “very good survey data” is going to be my answer to many of the problems this series of essays addresses….).
We need to be mindful of the fact that the group of us playing roles in ALS advocacy are not necessarily speaking for the whole group at this time. And those of us who are relatively privileged in our disease progression and assets have a powerful ethical responsibility to ensure that we take into account how policies and funding allocations impact the majority of pALS, who are either faster progression cases, or who are from households with modest financial assets, or both. If we are going to claim to represent pALS, we must be sure to represent ALL pALS.
This same logic applies to all of the ALS organizations and activists that advocate on our behalf.
The next essay explores “the steep learning curve” — the problem of acquiring competence to engage on ALS advocacy issues.
Ken's Caucus 