As the holiday weekend approached, I found myself with no plans and, rather than spend it alone, I recalled that last winter, a friend that I knew from disability circles had been looking for some volunteers for a convention she was helping to organize. So I texted her, showed up, and spent three wonderful days volunteering at the world’s largest convention for people with dwarfism.
Little People of America is a huge organization that was founded in 1957 and, unlike many disability organizations, is run almost entirely by and for the population that it serves, in this case, little people – also known as dwarves. (Dwarf is the medical term for people of short stature, but their community is called Little People, or LP’s.) As dwarfism is not the most common of disabilities, I have not had that much opportunity to interact with LP’s before, with the exception of my friend whom I already knew. However, I always, if you will excuse the pun, looked up to the LPA as a model for what the autistic community could someday become, and after my experiences at the convention, I am more sure than ever that little people are people whom autistic people should emulate.
The LP community has many things in common with the autistic community, as well as many differences. One major similarity is that just as autism presents itself very differently from person to person, so does dwarfism. Many little people have secondary disabilities, but these mostly relate to their particular type of dwarfism. For example, skeletal problems, breathing difficulties and hearing loss. One interesting thing I noted was that many LP can walk short distances but use scooters or wheelchairs for longer distances and to fully participate in activities. This to me is similar to how many autistic people can use verbal speech, but prefer to type or use electronic communication systems when they want to fully express themselves.
Another similarity is that LPs are of all races, classes and cultures. I met LP’s from all over the country and the world. Dwarfism, like autism, also tends to be genetic, but not always. As a result, families there could be made up of all LPs, just kid LPs, adult LPs with some kid LPs and some not, just about every configuration you could think of. Sometimes parents and kids would also have different levels of physical functioning. This is very similar to how in autism families some people have it, some don’t, and some people need more or less support within the same family.
Autistic culture and LP culture also appeared to be similar in that people genuinely cared about each other, and were happy to see one another. The kids were seen as a vital part of the community, newcomers were welcome, and the atmosphere was very jovial and friendly. It was clear that the people there delighted in being with others like themselves, and I have seen this same dynamic at work in autistic circles. There is truly nothing better than being able to say ‘oh, you too? I thought I was the only one!’
However, there were and are also some major differences between autistic and LP culture, the chief one among them being that LP’s, overall, do not have the communication or executive functioning problems that autistic people face. As my friend said, many LP’s do not consider themselves disabled at all. They are disabled enough to get a parking placard, or help with employment, maybe, but that is it. While LPA as an organization has become involved in some disability coalitioning, some LP’s do not see themselves as part of the disability community, and maybe in part that is because they do not have to. Autistics often do not have this choice. We have needs that we cannot deal with alone, and so we need the disability label to get help and support on an everyday basis.
I do not mean to dismiss the challenges that LPs face, but autism is hard, in a way that many types of dwarfism are not. Dwarfism primarily affects the body, but autism affects not just the body but the mind, every part of the body and brain. Autism is joyous, wonderful, delightful – but it is also hard. Autism disables you in every single aspect of daily living. From what I observed in the LP community, many people there only deal with physical disabilities. They communicate easily. They socialize easily. They navigated a new city easily. I saw few kids having meltdowns. I saw nobody in corners crying, no shouting, no fights. (This is not to say that these things didn’t happen, only that I didn’t observe them.)
For this reason, I think, LP culture is much more laid back. They do not start things and end things precisely on time. They are more disorganized and they are okay with that. Their leaders do not need to know every single answer to every single question, because people overall are not so anxious to know everything. They can let things flow more. The conference was louder than other disability conferences I’ve attended. It was assumed that the adults there could advocate for their needs and accommodations themselves. Transactions are simpler, quicker, because people do not need so much time to answer questions. As an autistic adult, it was quite unsettling for me how casual they were about time, but I must remember that different cultures treat time differently.
I helped out a lot in the childcare room, and the differences that I saw there were astonishing. No kids were off by themselves, stimming or playing quietly with electronics. They were all interacting with each other, forming groups, alliances, friendships, naturally and easily. They didn’t gravitate towards the adults, they gravitated towards the other kids. Autistic kids often do gravitate towards adults because adults are safer than other kids, who are so often mean and hard to understand. These kids also tended to be very articulate and speak really well, perhaps because they understand that as LP, people will treat them as younger than they are and so they need to compensate with verbal ability. Autistic kids may speak really well in their minds, but our verbal abilities seldom reflect our intelligence. (Oh, another similarity between autistics and LPs? The children were all astonishingly beautiful. I’m not kidding. Autistic kids are gorgeous and so are dwarf kids.)
There were several instances at the conference where my autism caused communication difficulties. For example, I asked one woman how old her children were. Six and six, she said. I asked if they were twins. No, she said, confused, her daughter was Asian, and they were white. Due to my faceblindness, I hadn’t noticed. I also couldn’t always tell if a person was a LP or not, again, because I do not take in visual details very well. The chaotic environment of the conference was stressful. I could never have dealt with the uncertainty and general relaxed attitude of the participants if I were attending instead of volunteering. But this wasn’t my culture; I was only visiting, so I tolerated it for the few hours I was there each day, then went home to relax.
Still, I do see the LPA as a model for some future autism conferences, and I do think we autistics can learn a lot from the LPA. The primary thing is that the convention was, above all, a celebration of community. It was not a place to get laws passed or advocacy work done; it was about socializing, about meeting friends old and new. There were some business meetings but the general membership meeting only took up one morning, and the board of directors met the first weekend. There were workshops, but they weren’t extensive. People were there to have fun, and it showed, with dance parties and pool parties and all kinds of fun events. (Fun for their community, I mean. I would have had a meltdown before I even approached a dance, which were, I am told, very loud and crowded and went on each night until the next morning.)
Another great thing that the LPA does is that they partner with doctors who are experts in dwarfism and dwarfism-related medical conditions. These doctors fly in at their own expense and give lectures and see people for consultations. People can’t get treatment, but they can get recommendations to bring back to their own doctors. I think it would be awesome if we had top neurologists or speech therapists or communication specialists who did this at autism conferences. There are some really, really great professionals out there but they are few and far between. What if we could somehow gather them all in one place? Wouldn’t that be something?
The LPA also promotes the formation of affinity groups, for example, groups for people with one type of dwarfism, groups for GLBT LP, groups for parents who adopted, regional groups, and so on. They also had several workshops/sessions that were for LP’s only. I’m not sure if the autistic community is quite ready for affinity groups at gatherings when we are still trying to come together as a community, but I love the idea of autistic-only spaces at conferences, and I would love to make them more of a reality.
The thing that I like best about the LPA is that there is never any question that LP’s are the experts on dwarfism. Unfortunately, that attitude is just not that prevalent in the autism world just yet. Whenever there was a gathering for parents, for example, there would be adult LP’s on hand to answer questions and guide parents through what it was like to live with dwarfism. Non-LP parents certainly enjoyed meeting each other, but never did they raise their voices higher than those of LP’s. Never did they disdain that someone with X type of dwarfism had nothing to teach them about their child with Y type. Older LP’s were respected for what they had gone through and the things they had endured, in order to make things easier for the younger generation. You rarely see this attitude in parents of autistic kids.
Interestingly enough, I met one LP who was also autistic, but ze was not interested in talking to me about advocacy or intersecting identities. I know that there must be more. I hope that in the future, little people and autistic people can come together more to learn from each other and build community. From my brief sojourn there, the LPA have a lot more to teach us, and I, for one, am eager to learn.