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Once more, I am participating in A Chronic Voice’s monthly linkup.

Planning, Justifying, Analyzing, Starting, Concluding

June is Pride month, and in New York City, the city-wide Pride parade is the last Sunday in June.

This year(2019), there was another option: the Queer Liberation March.

Heritage of Pride(HOP) runs the Pride Parade, and this year was Stonewall 50, the fiftieth anniversary of the Stonewall Riot that helped birth the modern LGBT rights movement.

Over the years, many changes have occurred, and the Queer Liberation March was created by a group of queers who wanted the event to return to its roots.

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Planning ahead

So I have taught myself to carefully plan ahead in all things.  With my Functional Neurological Disorder(FND) symptoms, it’s really important for me to be able to anticipate my needs, how an event will run, and if and how I can protect myself if anything becomes too demanding.

I was very active in Birequest, which is a bisexual discussion group in New York City.  We use the structure of a support group because it’s useful and helpful, but the point of our meetings generally is to create a space for people to know that they’re surrounded by others who share their bisexual identity, and learn from one another’s experiences.  

**Update** – I am no longer participating in BiRequest, though I do believe that most of those remaining in leadership have good intentions.

Our primary facilitator, Paul, was very active in the queer liberation march and did his best to encourage Birequest as an organization to participate in the queer liberation march, rather than in Heritage of Pride(HOP), which runs the ‘pride parade’ that most people are familiar with.  

**Update**: Paul was pushed out of BiRequest in August of 2019, and no longer participates in the organization.

Paul Nocera is our primary facilitator at birequest, and is seen here speaking on behalf of the Queer Liberation March.

There was a lot of discussion in Birequest about the dueling marches.  The first question was *if* each person in Birequest would feel comfortable being so publically out. 

We have people in all kinds of places in life, so it is a really valid question.

Some members haven’t mentioned their bi identity to anybody, or are debating if and how to tell their spouse, parents, or children, while other members(like me) have been marching for years, have their identity on their Face Book profile, and if somebody doesn’t know that they are bi, it’s not for lack of signals.  

We fully respect wherever people are on that spectrum, so there isn’t any pushing that a person “must” come out, but these marches have been a way for a person in Birequest to very publically out themselves when and if that’s what they want.

This year though, the additional wrinkle was where to come out. 

The Queer Liberation March, as an intentional protest, was planned to be very different from the HOP event that those of us who had previously marched had participated in. 

These differences, for me, sounded perfect.  

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Justifying my decision, as a disabled bi person, to march with the Queer Liberation March instead of Heritage of Pride

The first thing I need to say is that not everybody had to choose which one to march with.  The Queer Liberation March started at 9:30 AM, and went from The Stonewall Inn to the Great Lawn in central Park, and was followed by a rally on the Great Lawn that was expected to last until 3:30 or so in the afternoon.  

Heritage of Pride’s event(“the pride parade”) was scheduled to start around 23rd and 5th, and go around Greenwich Village until it ended around the same point on 7th Avenue.  It was scheduled to begin at noon and has tended to be a very long event, approaching seven or more hours in length.  

I have a lot of friends who marched in both. However, I knew that I didn’t have the spoons to do that, and in all honesty, a lot of abled people wouldn’t either.

Besides the differences in time and location, the most important difference was in why people were marching. 

The Queer Liberation March was intentionally designed to be an accessible event to allow people to point out the injustices that are currently happening to LGBT people in our country and all around the world. 

The main message was “we are not free until all of us are free”, and while queerness was the primary focus, most groups that marched were doing so due to inequalities that specific intersectional identities faced. 

My friend Godwin wears a bi flag shirt as he links arms with other march participants at the head of the line. Queer Liberation March 2019 © Leandro Justen

Birequest marched in large part because the bisexual identity is often erased or dismissed, even within the LGBT community.

Bi erasure and biphobia remain a large societal issue.

Through the Queer Liberation March, we could stand up for bi rights, bi needs, and make sure the bi identity isn’t erased by society.  

I wanted to march not only to stand up for the bi community but also to make sure that the disabled community was well-represented and had a voice. 

I am very aware of how frequently LGBT people with disabilities aren’t able to fully participate in Pride events due to accessibility issues.  For me, the decision was incredibly simple.

I wasn’t going to focus on HOP, I was focusing on the Queer Liberation March.

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'

Analyzing the Queer Liberation March’s accessibility

I was really impressed with the whole march.  The planners did a good job, to my mind, of making it accessible and building accessibility into the plan, step by step.

While the scales of the marches were somewhat different, a much more important aspect was simply that they registered and were treated as two very different events.  

Heritage of Pride is treated like a parade – it’s an event with a huge distinction between its marchers and its observers, and, accordingly, a high degree of difficulty in switching between being a marcher and an observer. 

Some of this is about safety concerns – with modern experiences of mass shootings, bombings, etc, there is a value in some of the barricades and to having police present at the event in case of an emergency.

However much of it is the result of the organizers choosing to design the event this way. 

I have participated in HOP for years. 

HOP is not very accessible.  

It’s huge.   Each scheduled marching contingent has a designated waiting point, which is basically an area of the street, which you need to arrive at by a certain time, so you will be ready to go at your scheduled march time. 

For example, one year we needed to be at our location by noon.

The march started at noon, and the people at the front came in as early as 9:30 or 10. Arriving at noon, we’d be really lucky if there was any movement at all by two, and might actually start on the route by three.

The march itself would often take a couple of hours, so the whole event was around 5 hours of standing, walking, or sitting on the ground without access to any amenities.

Sometimes your wait location is sunny, sometimes you’re lucky enough to be in the shade, but you do not have access to a bathroom, air conditioning, a safe space to sit, or water, for that prolonged waiting period.

Sometimes, there happens to be a store that has these things near where you’re waiting.  It will then be mobbed by people who are looking for that bathroom, AC, or water, so that accessing it is still challenging due to the crowding.

Anything you bring with you needs to be carried through the march, so it becomes really important to pack light.  

If your group uses a float or other vehicle, they have a completely separate position and waiting area for the event, so if you(as a person with a disability) are planning to march, you need to decide if you are waiting with the vehicle(and its driver) or the marchers, so you will be separated from some of the people you are participating with.   

To add insult to injury, starting in 2018, HOP also charged not only a registration fee for the group marching(which makes some sense), but also put a cap of 50 people one each registration, with people needing to purchase their own individual registration at the event. Paying for the right to participate in the march also felt counter to the concepts underlying the event.

Queer Liberation March 2019 © Leandro Justen

The Queer Liberation March, in contrast, was a protest march.  The minimum possible differentiation was made between marchers and participants.

There are few if any barriers, and while there are police at some intersections for crowd control, there is no enforced division between groups and nothing preventing bystanders from joining in or marchers from stepping out.

Other than having a designated lead contingent(representative of all participants), all other groups and individuals marching just found(or planned) a meeting point in that area.  By not being strict on placement in the march, the prolonged wait times became unnecessary.

The Queer Liberation March had a scheduled 9:30 AM step-off and encouraged everybody participating to show up after 8:30 or so, and just gather in the general vicinity. 

HOP’s marching space is surrounded by barriers and police, and you can only participate if your organization is pre-registered and you arrive at the staging area in time.  Once you are there, getting out again is challenging and getting back in is practically impossible.

The Queer Liberation March did everything possible to only represent the groups protesting(no corporations, only LGBT-focused nonprofits, and no police in the march) but also to constantly be able to have people join and leave the march when and if they felt like it.  The police presence was kept to a minimum as well,

This meant that you could watch the march anywhere along the route and join in when you saw the group you wanted to be with or step out if you needed a break or breather, or just wanted to see who else was marching.  

They also had a designated gathering point at 42nd street(Bryant Park) for people who couldn’t make the early start time or couldn’t do the entire march to join in. People gathered there around 10:30 or so, anticipating that the march would arrive by 11. While waiting, they were encouraged to drum, chant, and hold up their signs – getting into the feelings of the march, so they would be physically, mentally, and emotionally prepared when they joined.

Heritage of Pride is planned assuming that all participants are abled, and then adding in some accessibility support if they think about it. 

The Queer Liberation March, with its intentionality around protecting and supporting the marginalized queer community, made sure to be thoughtful and plan its event with people with disabilities in mind. 

It showed.  

I think the thing that impressed me most, though, was the rally on the Great Lawn. 

Queer Liberation March 2019 © Leandro Justen

Instead of creating VIP seating or first-come-first-served style seating, they pretty much designated the seating near the stage for people who needed the chairs, with spaces for wheelchairs as well.  

I didn’t sit in that area, as I didn’t need it and wanted to hang with the larger group of my friends from birequest, but I do know that a few friends from there did sit in the area, with an abled friend or two.  

The rally itself was also very well-run and focused on empowering the audience.  They chose a lot of interesting speakers, most of whom were multiply-marginalized. 

There were several disabled speakers who were part of the LGBT community, so seeing us represented was great, and besides making it more physically accessible, they also had a huge video screen above the stage. 

It was used to caption all the talks, and there was also a sign interpreter on stage throughout the show. One of the speakers was deaf, and there were several others with different conditions.  

I was really impressed with the work that they put into the planning that carried through on their mission to include the marginalized members of our(LGBT) community.  

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Starting in the Queer Liberation March

Kawa and I were actually front and center for the march, quite literally.  We were volunteered into the lead contingent, which was designed to represent the entire march. 

Paul had asked within Birequest if anybody was willing to march in the front, and decided that having me, Kawa, and a long-time friend of theirs would be a really good representation of the bi community(and our intersectionality).  

Queer Liberation March 2019 © Leandro Justen
Kawa is the third person in, wearing the hat with yellow, blue, and pink ribbons(pan colors). I am next to them, wearing a Bi flag(blue, purple, and pink) and holding up a sign

I made sure to hold a sign to indicate that I was representing the disabled community(it said “we are not liberated until all of us are liberated” with the traditional “handicap” symbol, and one for deaf or hard-of-hearing).

The signs were amazing and multi-lingual.  Mine was written in English on one side, and Spanish on the other, and there were many other signs – one of the more memorable was “Trans rights are civil rights”, which was written in English and Arabic.

We were up in the front for the first round of press photos, Kawa and I side-by-side behind the banner, holding hands while I held up the disability rights sign. I made sure that the poster was front and center for the photo op.

It was an amazing feeling, being up there and representing the bi community.  

Another friend of ours(Godwin) represented the bi community from the very front of the march – he took on the responsibility of marching in the very front to make sure that we, the banner carriers, weren’t harassed or endangered. 

He linked hands with the other volunteers for this position, and they walked a few feet in front of us, keeping the cameras, the crowds, and any danger they could see away from us.

Altogether it was really really amazing.  

The energy in the crowd was electric, even as we were just starting, and while Kawa and I had been worried that it would be negative and possibly overwhelming for us(my FND symptoms are very responsive to the energy in the space I’m in, and with their autism, strong emotions can easily become too much), but it wasn’t. 

Instead, I feel that “jubilant anger” best describes the feeling, with jubilation the stronger.

In this space, we weren’t alone.

Yes, we had things we were pushing for, injustices we were angry about, and significant needs to be recognized – but, we were surrounded by people who wanted the same things, and there is power in numbers. 

We weren’t protesting alone, we were surrounded by others with complementary and matching demands – others who felt strongly about the injustices of the world and who were also trying to get them fixed.  

There were people in wheelchairs marshalling the event.  

Queer Liberation March 2019 © Leandro Justen

Our leadership kept reminding those of us in the front to slow down so that we wouldn’t leave anybody behind.  

The beginning of the march wasn’t crowded with observers, but that was fine.  A woman on the side was offering free mom hugs, and Kawa took her up on the offer. 

After marching for a bit, I stepped back from holding the banner and was a little behind the very front.  

While there, proudly holding my disability sign, a man from Florida who was hard of hearing came from the crowd to tell me how excited he was to see my sign. 

We ended up marching along for a good while, maybe a half-hour or so, talking about how important it is to understand other conditions and different disabilities since our needs are so diverse. 

He was working with a group that focused on vision-related needs in transportation and community participation and was fascinated with how different the needs of different parts of the disabled community were.

I told him about this blog, and about my hopes to create a space for us to help one another.  We had a nice conversation through the noise and organized chaos that was the march.  

I reconnected with Kawa and another friend of ours, and eventually, we fell back to Birequest’s section, where I got to say hi and give hugs to our usual group members. 

About 20 blocks or so in, when we got to the area around 30th street, I realized that I was having trouble breathing – I was still getting air, but I was coughing and had to breathe more shallowly than usual. 

Pain isn’t the right word, and tight isn’t the right word, but it was uncomfortable, and it felt like inside my lungs my bronchial tubes were rebelling.

I’d had similar feelings before, this past winter as I was recovering from bronchitis.  I recognized it, so I wasn’t panicky, but I knew that I couldn’t keep walking for too much longer.

I let my friends know what was happening, and Kawa and I stepped aside in another block or so and watched the march continue.  

Kawa kept trying to keep up the positivity – we’d had a good run, we’d started in the very front, and now we were seeing the whole thing. 

If we needed to, we could even hop on the subway and jump to the front, and rejoin everybody at central park.

I didn’t want that though – I wanted to participate in the march over the whole distance.  I didn’t want to give up, drop back. I wanted to keep going.  

So, we stood to the side(well, more accurately, Kawa stood, and I rocked, bowed, stamped, and wheezed), and watched the march go by. 

At the end of the march, there were a few buses following, and so Kawa went in with me struggled along, and asked if I could ride in the bus because I was having trouble breathing.

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They knocked on the door to the bus, and it stopped and on we climbed!

Conclusion of the Queer Liberation March

I spent the rest of the march on board a bus.  It was full of other folks who were managing their own conditions that kept them from being able to physically walk that far.  A lot of them had mobility aids, and a good percentage of them were older, but they were happy to have us aboard, and made sure that we were okay.

The bus had some powerful AC blowing, which I think helped a little with my breathing(I suspect the humidity played a part in my breathing issues), and by the time I got off the bus, my breathing was back to normal.

Of course, with my movement symptoms going nuts, I was repeatedly asked if I needed a medic. 

As I said that I was fine, my head symptoms kicked in, shaking my head side-to-side. People in the back saw the person ask me if I was okay, saw my head shake ‘no’ and saw the woman who was talking to me sit back down, and so called out to make sure I was alright. 

Kawa did their best to reassure everybody that I was fine, and this was just part of a different condition that I had, and all I needed was to sit down and recuperate a bit.  

My nose started just streaming out mucus, and so I got the woman and Kawa to see if anybody had tissues to spare(it turned out Kawa had packed some and handed them over), and I sat on the bus, blowing my nose and trying to regain control over my lungs.  

As I caught my breath, I moved back a seat so I was across the aisle from Kawa, and handed my sign to the man sitting next to me. 

Kawa and I on board the bus. Still smiling, despite struggling to breathe and crazy symptoms!

He put it up in the bus window, and it felt really appropriate to have a disability rights sign up on the bus full of people with varying degrees of disability.  

Every once in a while, he’d flip the sign around, so that people could see that it was also in Spanish, and we made our way up to Bryant Park(42nd Street) where we were joined by the folks who had been waiting there.  

The march spanned over 10 blocks and they estimated that about 45,000 people participated.  

As we approached Central Park, the bus took a detour so that we could end up as close to the seating for the rally as possible.  The police escorted us deep into the park, leaving just a short walk to get to the accessible port-o-potties and the prepared seating area.  

Kawa and I stepped aside and had a small picnic before we joined the masses to discuss our next steps. 

My breathing had just about returned to normal, though I was still dealing with a runny nose, a cough, and my FND symptoms acting up.  I didn’t want to leave.

Kawa was feeling very peopled-out, so they wanted to go to the quiet of their home, or maybe wander the park a bit without interacting with anybody, so we agreed that, as we’d anticipated, we’d be splitting up. 

After we ate, they went with me to the rally, and we wandered until we ran into some of our friends from Birequest.  

I felt safe, now that I had folks that knew what was going on with me. My main concern when symptomatic is random people deciding that I’m having a seizure or otherwise incapacitated and trying to ‘rescue’ me. Kawa headed out, and I went to the rally, surrounded by friends who understood my needs and could support me.  

We had a wonderful time at the rally, and eventually went out for dinner, then headed home(in my case, back to Kawa’s), exhausted from a deeply fulfilling day.  

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Final thoughts: I am absolutely doing this again next time!

I had an amazing time at the Queer Liberation March.  As a bi person and a person with a disability, HOP events have been a little too celebratory without enough substance for me. 

People who share my identities aren’t anywhere near being treated as equal -there is too much bi erasure out there still, and rarely is enough consideration given to how people with disabilities can contribute to society or how much we have to give if only survival wasn’t such a fight.  

I found the Queer Liberation March freeing and supportive and thoughtful, and felt safe expressing myself in the process.  

I am so very glad that I was able to participate in it, and I know that they plan to continue to hold this march on Pride.  I plan to march in it again next year.  

**Update** Of course, Covid hit before the march could happen, but the Queer Liberation March did occur in 2020, with a theme of “March for Black Lives and Against Police Brutality“. I watched the live stream but did not feel it was prudent to go up in person.

Last year, I did participate in person(masked), and intend to do the same this year. If you’re in the greater NYC area and would like to participate, you can get more information(or request a wheelchair or other assistance) here: https://reclaimpridenyc.org

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

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  1. Well done on the March, it’s lovely to see so many people standing together for what they believe in. I think you made the right choice switching to the QLM rather than the HOP especially when it came down to your health.

    1. Thanks Anne! I love the emotional energy of events like this, and I am so very glad that the QLM was so well-planned. We had amazing attendance for our first event(though you could argue that it’s following a tradition, too- in the footsteps of the first several marches on Stonewall’s anniversary and on the heels of Stonewall25, which also ran an alternative march for a similar reason). This was very well-done and I want to credit the Reclaim Pride Coalition for being a thoughtful and accessible event!

    1. Hi Sheryl! Thanks so much – I know that the LGBT disabled community often gets left out, so I wanted to be sure to dig in a bit. NYC itself isn’t super accessible, but it was really nice to see the thoughtfulness QLM displayed in planning this march. It’s still an outdoor event full of people, but I feel like they did everything in their power to be thoughtful to our community. I’ve been frustrated at HOP events, and didn’t participate in it some years due to my symptoms. I know that there are a lot of people whose conditions are less managable or more prohibitive than mine, so I did my best to describe how it’s set up to encourage an even greater disabled presence in future marches. I feel like those of us with intersectional identities(or strong allies) are very welcomed!

  2. I am a Member of the Executive Committee of the Stonewall Veterans Association (SVA). I was also a charter member of the Gay Liberation Front (GLF), and have been a Regional Organizer for BiNet USA. I was diagnosed with a mental disabity when I was 17 in 1969. I developed a physical disablity about 5 years ago. Like you Alison, there is a long history of mental illness in my family. There is a long history of discrimination against biexuals in the gay and lesbian community. This is particlarly ironic given that the prime organizer for the first Christopher Street Liberation Day March was a straight leaning bisexual by the name of Brenda Thompson. Because HOP snubbed SVA and RPC was unable to provide for the Stonewall Car, SVA voted not to participate in either the New York Pride Parade or the Queer Liberation March. I wanted to march from Christopher Street, but due to my mobility that requires me to walk with a cane, I joined the QLM at Bryant Park.

    1. Robert, I’m so glad you were able to march! The discrimination issues are huge, and it was so nice that the QLM put their energy into creating such a respectful space for both the bi community and the disabled community. It’s so important for minority communities to support one another, I was thrilled to see it in action with the QLM. I’m looking forward to future events with that organization!

  3. Wow sounds like you picked the perfect march to participate in. So much work going into the banners and multi lingual signs and even having a signer on stage is leaps and bounds forward to promoting accessibility to all. I hope your breathing and body has recovered from all the activity and what precious memories you made and much needed awareness you brought to New York. Well done such an amazing feat!

    1. Niamh, thanks so much!

      I was really impressed with the Qeer Liberation March’s accessibility efforts, and definitely glad that I had chosen to participate in it!

      I am doing better – the breathing problem was apparently a one-off event, and I now have a rescue inhaler in case it happens again.

      Did well enough to not pull any muscles so while I’ve been needing extra sleep, I pretty much recovered from the march during that week.

      Thanks again, and I hope you are doing well as well!


  4. Well done for attending the March, I can only imagine the toll it must take going to something like that all the while navigating it all with the symptoms of FND. It sure sounded like you had a good time and well done for standing up for something you believe in!

    1. Rhiann, thanks so much! I had a great time, and really enjoyed hanging out with friends during the rally! While the breathing stuff was a huge surprise, I got through it ok….I am actually wondering if it might have been FND related!
      The energy at the march was empowering, and I feel great that I could March for both my bi identity and my identity as a disabled person.
      I actually did the disability pride March yesterday, which was fun too, a bunch of folks from the QLM joined in, along with a group of us from birequest and a few more. One of my fellow marchers also had FND! Actually meeting another FNDer in the March was also great! It was a great afternoon, though a bit exhausting with the time spent in the hot sun.

      Hope you are doing well!

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