Dora Raymaker

My name is Dora Raymaker. I live in Portland Oregon, though I come from “the other Portland” – Portland Maine.

I’ve lived in Oregon since 1995. My primary interest is complex systems.

I also enjoy writing science fiction in the three minutes of spare time I have each day!

I just won a 36 hour short story writing contest, which I’m pretty pleased about!

I don’t have a single job title because I do a lot of different types of work.

For some projects I have more than one title. For example, on my current main project I’m both Co-Principal Investigator and Project Manager.

I don’t fit employment boxes or job titles neatly because I tend to always need to create my own jobs.

The work I’m currently doing is mostly research in the health sciences field.

I also do a fair amount of web development, technical communications, information architecture, and computer programing.

My main project currently is an NIMH-funded study to create and try out an interactive toolkit to help improve healthcare access and quality for adults on the autism spectrum.

Most of my research projects are community-campus partnered projects between academics and people with disabilities.

I co-direct the Academic Autistic Spectrum partnership in Research and Education, which is a community-campus partnership with the autistic adult community.

When I was a child, I was fascinated by taxonomic models of dinosaurs, and ordering small stones by their physical features, and wondering what caused these amazing patterns.

I’ve always loved science, not because it is “about facts,” but because it is deeply creative within the structure of its rigor.

However I took a few detours then because in 1995 I graduated with a Bachelors’ fo Fine Arts in Painting and moved to Oregon because I heard there was money out here for the arts.

Then I ended up in one of those “right place at the right time” situations, working in a telecommunications company just as the tech boom started.

I was able to carve out a job in information technology that enabled me to grow professional skills related to my special interest in complex systems.

While I went to an office building every day, the job was really like telecommuting for me because for much of the time I worked overnight shifts or off-hours and did most of my communication with co-workers via email and text chat.

Because people in the office knew I was limited in my ability to use the phone and in-person modes, I often ended up using remote collaboration technology with the person on cube over even when I did work during business hours.

Around 2004 I got bored. And I realized that placing my intellectual fulfillment at a corporation’s whim was not my best idea ever.

I decided to go to graduate school and get a degree in systems science so I could go off and do what I was really interested in doing from the start.

I was heading back on the science track.

Then my boss, who acted as my interpreter, advocate, and protector quit. Then my office moved to a new building. I lost the routine I had for 10 years.

I lost all of the informal accommodations my boss had created for me.

When even small things change, it is hard for me to manage them.

This was so much change, I couldn’t even make sense of where the rooms were in my own house.

I became frequently catatonic, and unable to produce work.

I ended up in the vocational rehabilitation and social services systems trying to not lose everything I’d built.

Luckily, my pain and fury and confusion pushed me to learn more about disability rights, the autistic rights movement, and how to improve my own situation.

I ended up an approximately a zillion E-lists related to autism, including a local listserv of parents I was put on by accident.

There I met my good friend and main collaborator Christina Nicolaidis.

She and I started talking about issues with autism research, how much of it wasn’t relevant to anything autistic people cared about, how much of it used dehumanizing or offensive language, or reinforced stereotypes, and how little of it seemed to do anything to improve our lives.

Christina is a physician and health services researcher, and she was already doing community-based participation research with local African American and Latino communities.

The issues we discussed with autism research were the same ones that had come up in communities of racial and ethnic minorities.

They were issues community-campus partnered research was intended to help address.

So we decided to stop complaining and take action.

Somewhere in there I finished my master’s degree.

And that’s how I ended up doing the research work I am currently doing.

I also use the skills I developed at the telecommunications company to do contract work in an attempt to make ends meet.

I use computers. A lot of computers. Mostly Mac and Unix computers.

I use computers for everything from performing statistical analysis to writing papers to conducting meetings of me research team.

My work is so dependent on computers that honestly I don’t know how to answer the question of how it helps me accomplish my responsibilities because my responsibilities literally wouldn’t exist without computers.

I’m able to have control of my environment. This is really important for me because my environmental conditions can be the difference between me being a productive worker and me overloading and shutting down.

I am able to communicate in modes that work well for me; specifically in writing and reading rather than speaking and hearing.

I am also able to communicate asynchronously, which sometimes is necessary because of the way I process information.

I am able to have collaborations with people who live distant from me.

I do not have to leave my house too often which gives me much more ability to cope in general with everything else.

Things go more slowly with remote work. This can be especially bad on tight deadlines. I cope by trying to pad out my time more but that doesn’t always help.

I also think there’s something important that happens in in-person meetings in terms of bonding.

Even though I typically find in-person contact stressful, I have also found that after people form a remote collaboration get together in person, the relationships and dynamics change and become more easy and flow better.

I’m still struggling to find a way to achieve this effect for teams that can’t ever have an in-person meeting.

I think it’s important to understand we frequently have uneven skills, and not in expected ways.

For example, I can do advanced mathematics but I cannot add or subtract single digit numbers.

This can make existing job descriptions difficult for us to fit.

I’ve always had to create my own job positions because despite my skills I don’t fit any existing job descriptions due to the large and atypical gap between what I am good at and what I cannot do at all.

Being good at facilitating job carving with employers, modifying job descriptions is important.

I also think it’s important to understand that we are people with the same variation as any group of people.

We do not all want to be computer programmers, and we are not all well-suited to being janitors.

I think it’s really, really important to match someone on the spectrum with a job related to their special interests. Be creative!

Be flexible. Really, really flexible.

People on the spectrum do not easily fit boxes.

Our needs are extremely varied, as are our interests and our skills.

I also think it’s really important to, whenever possible, find a champion for the person at their job, someone who will watch their back, help translate, make sure they are told of changes, things like that.

I have only ever succeeded in an employment setting when I had that type of person.

Finally, remember that without sufficient support elsewhere in a person’s life, work isn’t possible.

When I don’t eat, it effects my ability to do work.

When I work, it makes me not eligible for services I may need in order to eat.

There’s a bigger picture for us than just a job!