Alison in Bi mask at Poor People's Campaign rally 8/2

I’ve been active during the time I’ve taken off from posting. One of my biggest efforts was a multi-day trip to Washington, DC to join the Poor People’s Campaign in a push for congressional reforms through civil disobedience.

We had a simple set of demands for the Senate, which has, of yet, been unfulfilled. Our focus was on ending the filibuster, passing the full For The People’s Act, reinstating the 1965 civil rights voting act, fair and respectful treatment of our nation’s immigrants, and increasing the federal minimum wage to $15/hour.

I was among the 204 people participating who were arrested for our actions – and so much of it was a unique experience. I wanted to share with all of you what it was like, and how the Poor People’s campaign handled accessibility and accommodation needs during my participation.

I think that overall, they did well in terms of the protest itself, but their planning for the hotel stay left a lot to be desired.

This post is using the prompts provided by Sheryl Chan of A Chronic Voice—and I’m grateful for her creating this excellent link party!

This month’s words are gazing, shaming, defeating, concentrating, and empowering.

Gazing into a future focused on equity

Every meeting of the Poor People’s Campaign involves the statement “Forward together, not one step back”, and the underlying ideal of lifting from the bottom(helping the worst off) so that everybody rises.

No person left behind is the goal, and I joined the Poor People’s campaign because of these promises.

I am part of multiple marginalized groups and felt that participating in the Poor People’s Campaign would be a good way to support all of these identities simultaneously.

I’ve written before about the stigma surrounding both poverty and disability, and feel the Poor People’s campaign is doing work that aligns closely with my concerns over these matters.

Considering that so many members of the disabled community are poor, the poor people’s campaign is a wonderful space for us to participate in – and our insights could be key to helping this group succeed.

I’ve viewed my role within the Poor People’s Campaign to be one of a reformer-from-within, working to help the community to better understand how to support the disabled community – many of whom are already part of the campaign.

While they are doing many things right and meeting many of the basic requirements for inclusion of disabled people, there are many ways that the Poor People’s Campaign are still falling short of their goal of keeping disabled members feeling like a valued part of the community

turqouise blue banner ad.  The Thriving While Disabled logo is to the left, with a picture of Alison smiling on the far right.  The text in between reads 'I want to help you understand your options' and in smaller text 'Navigating social welfare benefits coaching'

Shaming and forgetting disabled people

I started getting details of the event less than two weeks before it occurred.

The Poor People’s Campaign was looking for representatives from every state to come out to DC and participate in civil disobedience.

New Jersey’s participation is relatively new and disorganized and we didn’t have many people to ask.

After realizing that I did have the days for the trip free, I decided to participate.

The PPC offered to cover the financial costs associated with the trip and stay for those of us who needed that support, which was wonderful – but many aspects of planning would be challenging for many disabled folks because of the short notice on transportation and accommodations.

Accessibility support that wasn’t

When I had filled out my information for the protest and hotel stay, I had checked that I had a disability and needed some support from PPC.

I was contacted via text on Sunday(the day I left for DC) by a person who was managing accessibility needs for Monday’s march. I started asking her questions and she apologized, explaining that she was currently in transit to DC and would know more once she got there.

I found her a few hours after I got to the hotel and talked with her further, and explained my particular situation – and how my concern was less about being able to participate and more about the possibility of my symptoms being misinterpreted as a medical emergency(or resisting arrest).

I wanted to make sure that people were prepared to see me symptomatic and ready to just give me space if needed – and to help protect me from the possibility of a bad reaction from the police.

members of PPC singing as police stand by
It was a huge event, and I was concerned about everybody’s response to my symptoms

She nodded and said she’d introduce me to Kait, who was leading the marshals for the march, as she thought Kait was better prepared to help me.

That evening, after dinner, she did eventually introduce me to Kait. She also informed me that she wasn’t managing accessibility needs anymore, but couldn’t tell me who was.

I explained my Functional Neurological Disorder(FND) again to Kait, and she reassured me that folks would keep an eye out for me and told me that she’d introduce some additional marshals to me, so they’d be aware as well.

At the end of the training that evening, I also spoke to one of the lawyers there.

They understood my concern but felt I likely would be safe and simply recommended that I state that I had a movement disorder when the officers approached me – and if necessary to also state that I was not resisting arrest.

The next day, at the rally, I wasn’t introduced to any marshals, and I didn’t see Kait until we were being arrested.

Not all disabilities are visible

I think the most upsetting thing during my time there was when we went to pay our fines after our arrest. We needed to schedule to stay two extra days after the protest in order to manage those payments, and I was in the second group to go out to pay.

PPC very thoughtfully arranged to have us go in groups, and for each group to have a driver available to transport anybody who felt that traveling by Metro(with a multi-block walk on one end) was going to be too hard for them.

When they first announced this offer, only one person raised their hand for that assistance.

Angela, post-arrest
Angela and I were arrested together. Lovely bonding moment for two ladies with invisible disabilities!

Another woman(Angela) and I, both of whom had invisible disabilities, realized that only that one person had requested help and that we both would benefit from saving our spoons that way.

Both of us hadn’t initially responded in part due to internalized ableism. We could do the walk, but it would take a lot out of us.

We asked to accompany him and got the response from another PPC employee of “It’s only for the people who NEED it.”

We were a bit shocked by that response, but I had the wherewithal to respond “Yes, we’re both disabled”, and we got in the car without any further issues.

It just really hurt to have this woman assume that we didn’t need it – especially when the two of us going didn’t add any “cost” to anybody.

Somebody was already riding in the car, somebody was already driving it, and there were seats for up to four passengers.

Nobody else was asking to ride in the car, only the two of us. Questioning our need for a ride served no useful purpose and only served to make us feel alienated.

I also recall a conversation with one of the tri-chairs of the Ohio Poor People’s campaign about his interest in having better representation of disabled people within PPC.

He commented on not seeing many disabled people participating.

He was sitting at the table with at least two disabled people and my conversations about disability had revealed that many folks at the event were disabled – just many of them didn’t have super visible conditions.

left side holds a picture of Alison gazing levelly at the camera.  To the right, white text reads "Medical care decisions feel overwhelming?" and in smaller brown text "Click here to learn about my medical care coaching".  The far right of the banner holds the Thriving While Disabled logo

Defeating ableism one interaction at a time

I took the time to correct the tri chair on his misunderstanding about disabled people participating, and we had a great conversation about societal ableism and the work of inclusion.

I agree that there were not many full-time wheelchair users staying at the hotel(it’s possible there weren’t any), and I didn’t see sign language used, and while I did see one blind person participating in the march, I’m not sure if he was staying at the hotel with us, or if he only was there for the march and the training right before it.

I know that I only saw him on Monday, the day of the protest. He did seem to be well-treated and had a volunteer from PPC there to guide him every time I saw him. I didn’t get a chance to engage him in conversation.

The woman who questioned our participation didn’t talk with me further. I caught a glimpse of her at another time, but she made no effort to further converse with me, and I didn’t feel up to searching her out either.

I also had another wince-inducing moment during the press conference, when Rev. Barber referred to our community as “Differently-abled“, rather than “disabled”.

Self-care and self-advocacy the day of the protest

I intentionally engaged with a lot of people about my FND. I wanted as many people as possible to be aware of my symptoms and needs and be ready to support me as necessary.

When the rally portion started, I decided to save myself some spoons by sitting to watch the rally instead of standing for the whole thing.

While the PPC did have wheelchairs available, I did not feel I needed one, especially not for the entire march.

I’d been told that it was only four or five blocks – a distance I generally can walk easily.

Alison being pushed in wheelchair by minister
A shot from the wheelchair of me being pushed by a friendly local minister.

What they neglected to mention was that two of those blocks were solidly up a hill. As I limped my way up the hill, I was shaking pretty badly and I had people repeatedly ask me if I needed a wheelchair.

I gave in and said sure.

She pushed me up the hill, and as we crested it, I saw row after row after row of police officers, which was a bit overwhelming.

I also figured that them seeing me in a wheelchair might be helpful if there was any confusion later – so I stayed in for a bit longer.

The minister pushing me let me know I could get out at any time. I wasn’t quite sure how to take that.

I did get out and walk again before the end of the march, and I proudly limped into the street and sang there with the rest of the protesters willing to be arrested.

turquise blue banner ad.  On the left is a picture of Alison's face.  On the far right is the Thriving While Disabled logo.  In the middle, the text reads 'You deserve to thrive with your FND' and in smaller text 'click here to learn more!'

The arrest itself went smoothly

We were arrested in groups of 10, with each group cuffed with a little bracelet with the arresting officer’s name on it.

When it was my turn, I was shaking already, so I limped forward in line and held out my shaking arm, telling the officer that I had a movement disorder.

He carefully put the bracelet on, barely touching me, and the officer who escorted me over to be processed stood near me but didn’t touch me at all.

I’m grateful that the arrest itself wasn’t a huge issue from a disability standpoint.

After that, we basically sat out in the sun for hours, waiting to be processed. Kait was arrested a little before me, and checked in with me when she saw me.

police at protest
There were a lot of police at the event, and given the responses protestors have had recently, I was concerned about their response to our protest.

Angela(who I mentioned earlier) was arrested around the same time as I was.

We had connected over other work I’d done towards creating a disability-focused group within the PPC.

She lives out in Nebraska and I hadn’t known that she was coming to the event.

Shortly before the arrest, I noticed her, and after we were arrested, we started chatting.

We ended up spending much of the rest of our time in DC hanging out together, and we went together to pay our fines.

When I finally was released after getting processed and being given my fine, I limped out and was given water and snacks, then had to walk another block or so to be picked up and taken back to where our day had started(and to the bathrooms there).

I was given a wheelchair at some point in the process, which I was quite grateful for.

I got pushed to the bathrooms by another member of the group, and we discussed just how low priority accessibility is, as the five of us(two in wheelchairs) made our way around the park, rather than across it, adding extra minutes to everybody’s trip.

Throughout my trip to DC, I had conversations with many folks about disabled inclusion and what a truly inclusive space would look like.

I also made a point of seeking out other people who were involved with disability inclusion or were disabled themselves, to see what we might be able to do as a group to help the Poor People’s Campaign truly live up to its vision of being fully inclusive of all poor and marginalized people.

I’ve made it my mission to do my best to point out what needs to be done to keep disabled people feeling included and considered by the poor people’s campaign.

Concentrating my efforts within the Poor People’s Campaign

There are reasons that I am concerned about Poor People’s Campaign’s ability to carry through on including the disabled community.

On the plus side, PPC has been good at having ASL interpreters at their public events, and on all National virtual events, so that Deaf people can generally participate in them.

This has not carried through to the state level, though.

I also was asked at one point to join the newly formed Accessibility Working Group to help ensure that people who didn’t speak/understand English and people with disabilities could fully participate in Poor People’s Campaign events.

We were to provide guidance and best practices for the states. The first meeting had been in October of 2020, and the February 2021 meeting was canceled with no explanation given. There hasn’t been a meeting since.

I asked about the working group while I was waiting around to be processed.

Kait(who I mentioned earlier) had been sitting near me, so I asked her what had happened, and when the committee would be meeting again.

She informed me that there’d been a change in employees and that they were sorting out who would be running it.

It’s disappointing to be told that your working group is such a low priority that they haven’t bothered to replace leadership or update the members of the working group in six months.

turqouise blue banner ad.  The Thriving While Disabled logo is to the left, with a picture of Alison smiling on the far right.  The text in between reads 'I want to help you understand your options' and in smaller text 'Navigating social welfare benefits coaching'

Empowering my fellow disabled folx to participate in the movement

I have to say that overall my experiences with the Poor People’s Campaign, and participating in this protest, in particular, have been positive. Their preparations for the protest itself were on par with the Queer Liberation March, and their accessibility features were easier to find prior to the start of the march.

I strongly encourage other disabled people who want to support this movement(and most of us are in the demographics they are trying to support) to do so!

I also encourage checking out your state’s PPC program to see if you can participate.

I’m not writing this post because I think they are intentionally ableist or aren’t supportive of the disabled community.

In fact, Rev. Barber himself is disabled and has a condition that impacts both his mobility and the quality of his immune system(anklyosing spondylitis).

What I do want to do though is help the Poor People’s campaign see and understand the holes they have in their current setup in terms of accessibility – and I want to give you, my readers, a heads-up on what to expect or anticipate if you decide to participate in the Poor People’s Campaign.

Reverends Barber and Theoharis, leaders of the Poor People's campaign, hold the list of demands, with other marchers visible in the background
The Rev. Liz Theoharis, center left, and the Rev. William Barber lead a Poor People’s Campaign demonstration march in Washington, Monday, Aug. 2, 2021.
Religious News Services photo by Jack Jenkins

My understanding is that generally activist groups tend to be inherently difficult for disabled people to participate in in-person, and so the Poor People’s Campaign may very well be one of the better groups to work with.

They were thoughtful in multiple ways.

They actually asked on multiple occasions about accessibility needs, and they did (eventually) give responsibility for managing information to one of their staff members.

At the protest itself, they had a fair number of wheelchairs available, and volunteers to push them.

The blind man I saw participating in the protest was given a volunteer guide so he appeared to have any help he might need available to him.

The PPC provided food, and while I felt that their labeling system wasn’t ideal(or super helpful for people with allergies), they did at least have a variety of food available and took the time to label the major ingredients, and whether something was vegetarian, vegan, or contained meat.

They also had gluten-free options labeled a fair part of the time.

left side holds a picture of Alison gazing levelly at the camera.  To the right, white text reads "Medical care decisions feel overwhelming?" and in smaller brown text "Click here to learn about my medical care coaching".  The far right of the banner holds the Thriving While Disabled logo

What I’m getting at is that the Poor People’s Campaign means well and is trying to be inclusive.

They have handled many of the really big essentials for us as a community to participate.

They have created a space for us to specify our needs.

This is a group and a space that’s worth us investing some time, effort, and energy into helping them get to the next steps – of acknowledging the systemic ableism that makes it harder for us to participate in society.

It’s possible that each state will need one or more disabled people participating actively in leadership in order for the accessibility message to be recognized.

If we can get the Accessibility Working Group active again, maybe we can help all states be accessible for our community.

I plan to keep investing my energy into this group – so that our community feels fully recognized, respected, and engaged. Would you like to join me?

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6 Comments

  1. Thank you for your efforts in raising awareness and advocating for equal rights for everyone. It’s sad how marginalised and misunderstood those of us with chronic illness are. Hopefully as more awareness is raised things will change and we’ll receive more support and understanding. I’m so sorry to hear you didn’t receive more support and experienced so many difficulties during the campaign. It’s sad that the company who organised it didn’t help you more and provide the necessary accommodations that their campaign is advocating for!

    1. There’s always work to be done. I’m glad PPC does as much as it does, but they aren’t yet fully considering how to have everything be fully accessible. Thanks for your support!

  2. This is interesting – such activism would not be tolerated here in Singapore one bit 🙁 Sorry to hear about the arrest and troubles you ran into. And thank you always for being a great advocate and joining us in the linkups! 🙂

    1. hey Sheryl,
      Thank you for that reminder of how differently different countries handle protests and freedom of speech!

      Again, the arrest itself was very much expected – it shouldn’t have any major impact on my future(social security benefits are not impacted by having been arrested, and I don’t have any form of conviction, just the arrest – paying the fine was pretty much the only cost to me, as long as I don’t make a habit of getting arrested!

      Participating in the protest and arrest was “good trouble” so to speak – my helping to make a statement about how unjust some of our current laws are(there’s a LOT of voter suppression laws being passed currently, and disabled people will be impacted by them).

      Always glad to help out and love participating in the linkups!

  3. Alison,

    Wow! This story is so intense and I am genuinely so sorry for what you have been through. I am sad to read that there was so little support in place. I often have to remind myself that the US and Canada have just as great of problems with accessibility as Taiwan does. That said, we would not be allowed to do something like in Taiwan and I guarantee that if we were allowed to do it, we’d have many problems. It frustrates me to no end to think that the world continues to make things so difficult for us.

    Take good care of yourself!

  4. Carrie – thanks for the empathy!

    I’m glad to be participating in the Poor People’s Campaign, and hopeful about the future – just frustrated how very back-burner it seems like accessibility concerns are!

    We seem to be the forgotten ‘ism’ that people don’t consider yet. I’m just trying to make sure that we are recognized, considered, and respected.

    I mostly got what I needed, and overall the experience was good…but I was highly aware of the gaps in the supports other members of our community would need!

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