Yes! I am a researcher. The research story of a young adult with Down syndrome

Giving consent (saying yes or no)

Before we could begin doing any research, we had to say ‘Yes’ or ‘No’ to many things about the project like wanting to do it, using our real names or a pretend name, photographs, work samples and things like that. This was called giving consent. Each of us did this one at a time before we started.

I read an information sheet all about the project that Michelle had mailed to me. My parents read it with me. Then, I came to the university and Michelle went through the information again to make sure I understood it and to answer any questions I had. We read the consent form together, then Michelle left the room. One of Michelle's university advisors then talked to me about all the things on the consent form to make sure that I understood and really did agree to each part before I said, ‘Yes’. When the advisor was happy that I understood and could make good decisions about what I wanted, Michelle was called back in. Together, we went through the consent form again and I signed the parts that I agreed to.

When Joseph joined the project and did the consent, he said, ‘No’ about his real name being used and said that he wanted to be called a different name instead. Even though he said ‘No’ about using his real name, he said ‘Yes’ about his photograph being used in the project and at conference presentations and also in any articles that we might write. We all said ‘Yes’ about using our photographs. So whenever we use any of his work or write about him, we have to use the different name and not his real name, but we are allowed to show his photograph. Only the people in the research are allowed to know who he really is. This protects his privacy. I felt very important to be asked what I wanted and to be able to say ‘Yes’ or ‘No’ to things about the project and me.

Working together

In this project, we all worked together to find new ways of doing research together and to find out about how we use literacy in our everyday lives. This is called Participatory Research.

There were three research partners but we all started at different times. I was Michelle's first research partner. We always started each research session with a meeting session. We were all equal in these sessions, and we brainstormed ideas about what we wanted to do, how to do things, what tools we wanted to use, and we shared our thoughts and made decisions that everyone agreed with. Brainstorming is where everyone talks about the topics and ideas.

We tried lots of different ways of doing research together. Some things worked well like having meeting sessions, talking about the research, using power-point slideshows to learn about research and recording everything on a video camera.

When we started, we used a teaching laboratory at the university so I could learn about research and how to do it to collect information about my everyday literacy. Each week I wrote a TO DO list of the things I needed to do for this research project. It took me about 1 week to do the things on my list. I am very happy to do this research.

Michelle used power-point slideshows to teach me all about research, the ways we get information and the tools we use. In the 2nd cycle, a new partner joined us and I did the teaching (see Fig. 1) with some help from Michelle In the 3rd cycle, another new partner joined us and I did the teaching with the 2nd research partner.

Working together to learn research jargon

Michelle talked to me about other people with learning disabilities who were doing research and did not like what they called ‘research jargon’. Michelle wanted to know what I thought about using research words. I really liked to learn all the big, hard research words. So in our research, we used research words and plain language together. For example, another word for information is data. I learned to record the data and to think about the research. This is called reflection. I learned how to work with our information. This is called data analysis. Sometimes in our writing, we used abbreviations like PPTS instead of writing the word power-points.

Working together to do research as part of a PhD

Even though this was Michelle's PhD, we all worked together to help Michelle to find the best ways of doing research together. Michelle needed us because we are experts about our own lives and how we learn and do things in our everyday lives. We had to teach Michelle about our own lives and how we like to learn. We helped her to understand about how we use literacy in the real world. We shared our ideas about how we like to learn and about our literacy and how we use it.

Michelle will get a PhD for doing this research. Some people might think that because we do not get a qualification for doing this research that we get nothing. That is not true. What we got from doing this research is confidence, getting more skills, being able to work with other people with and without disabilities, learning so many different things and getting a lot more knowledge. I was happy to do this research. Doing this research made me feel important and when I wore my university shirt, I felt like a university student. The lecturers, university staff and other students who did not have learning disabilities always treated me like I was just another university student and that is how I felt. I had the mailroom door code and collected mail like everyone else. I used the library and went into other teaching laboratories just like other university staff and students. When I wore my university shirt in public places I saw myself as a real university researcher and I think that is how the public saw me too. Doing the research has helped me in many ways in my real life like knowing more about how I am using literacy, using more literacy skills, and using lots more different technology now than I did before.

Working together to create scaffolds and resources

We tried different scaffolds to help me to be able to write a research diary and record information about the research. A scaffold is something that helps us to record information and to think about what we are doing in the research. Table 1 is an example of a scaffold that was used to help us record data so that we could analyse it. Scaffolds can have words and headings that help us to think about different things that we are doing in the research like observations, interviews, analysing data, writing a research diary. Scaffolds can be written tables, prompt cards and How To guides.

Table 1. An example of a scaffold

We developed many resources like booklets, prompt cards and How To guides to help me to collect data. I also learned how to use a video camera and a voice recorder. We tried different ways to collect data about my everyday literacy. We found that the best way was joining in, prompting about what and how literacy was used, and capturing the real life on video.

Problems and issues

Some things did not work. Some of the scaffolds were too hard or too long so we changed them to make them easier to follow and quicker to use. We found that for the other research partners, writing was too difficult so we used voice recorders and video logs for them to record information. Doing observation of literacy, or watching from a distance did not work at all. Joining in and talking about literacy while it was being used was much better. This is called participant observation.

We did not have very many big problems with the research. Sometimes in the third cycle, it was hard to organise days and times that suited everyone. But with group negotiation we managed. Michelle was in hospital a lot throughout the project and for nearly the whole time in cycle 3. By this time, Joseph and I had learnt to be researchers and we knew what to do, so we managed with Michelle's disability assistant and by talking to her on the phone or by email. Even though we missed Michelle, we liked having the opportunity to do the research on our own. I was actually quite proud that I had learnt so much that I could be a researcher with only a small amount of support. Sometimes we had trouble with the card access to get into the university room but the lady in the office and the security people helped with this problem.

I learnt so much about research, how to do research and how to be a researcher.

I love research

When the first cycle had finished, Michelle asked whether I wanted to stay on board and take on more of a research role. I felt very happy to be able to keep doing research. A second research partner joined us. Now I got to teach him about research and how to do it. I ran the meeting sessions. I used the video camera. I collected the data about his everyday literacy. I recorded the information. I also analysed our data.

I loved doing research so much that I wanted to keep going with the last research partner. My role changed to being the research director. Michelle was there to support me, but I ran all the research. For most of the sessions, Michelle was in hospital and could only help over the phone, by email or by texting. We did have an assistant who did not have an intellectual disability, but the three of us did all the teaching and research together and on our own. It was the best thing I have ever done.

Our research is unique

Michelle asked me whether I wanted her to make other research articles about people with learning disabilities doing research easier for me to read. I was not really interested in reading about what other people were doing. I just wanted to do our research. But Michelle did tell me about some of the articles she had read. (We have included these in the reference list). She said that she did not find any research about everyday literacy and adults with intellectual disability. So that meant that our topic was unique. She said that there were some similarities and differences in the ways that each group did research. The main similarity was that all of the research projects had a group or individual with learning disabilities who worked together with people who did not have learning disabilities. All of the research projects wanted to let people with learning disabilities tell their stories and have a voice. Some of the research was based at universities and were part of someone's PhD. Some were projects done in community groups. Most of the other research projects just did interviews and had discussions about things. Most of the projects did not include the people with learning disabilities in data analysis and if they did it was mostly talking and reflection. Some learnt about research and how to do it and some did not.

I think our research is unique because it is the same as what university researchers without disabilities do. It seemed to be bigger and more complex than some of the other research that Michelle talked about. We learnt about the theories and the hard stuff about this research. We learned lots of different research skills and different ways to collect data, and we are working with our data to find answers to our research questions.

Collecting data in the field

After we had learned all about research and how to do it, we had some practice sessions to try the different ways of doing research and collecting data. I also got to practice using some of the data collection instruments, like the video camera. First, we did mock scenarios in the teaching laboratory. Then, we did field practices around the university campus, like in the coffee shops. Finally, when I was ready and felt confident, we went into the field.

Before we could go into the field, we needed to decide where to go. Here, I am writing a list of field sites to go to, to get information about my everyday literacy. A field site is a place we go to, to collect information for the research project. Some of the field sites I chose were: The Library; Mt Coot-tha lookout; Southbank; Lone Pine; the art gallery; bookshops; CD shops; and clothes shops. These are places where I use literacy and that I go to in my everyday life (Fig. 2).

For my first time, I went out to the field sites to have a look at my everyday literacy. I was viewing with a telescope at Mount Coot-tha. The next thing I did was to look at all the signs and the information boards and talk about what they did in the olden days at the Mount Coot-tha look out. I thought the information was interesting to make it better for the tourists.

Next, Michelle and I went to the Botanical Gardens to find out about my everyday literacy. We also went to the Planetarium. I had a fun day out and we collected a lot of data about my literacy in the real world.

Figure 4 is from the second cycle. For many weeks, I got to teach Joseph about the research. Then, we went into the field, and Michelle, Joseph and I collected data about Joseph's everyday literacy.

This was the first time I used the video camera to record Joseph talking about his everyday literacy and how he uses literacy in the real world. I am now doing more of the data collection by myself. I am becoming a researcher.

I can do observations of everyday literacy use and I can use prompt cards to help the others to think aloud so we can understand about how they use everyday literacy. Table 2 shows a prompt card that we held in our hands to help us to remember what things we wanted to know about the other partners’ everyday literacy. We went into everyday places like shopping centres and we used a video camera to observe and record what everyday literacy was being used and how the research partner used it. We asked questions from the prompt card and some questions that we thought of at the time, to help us understand about how the research partners were making sense of the literacy they were using. It is hard to talk about how we use literacy in the real world, so these prompt cards help us to be able to think about what we are doing and talk about it. This is how we collected data about our everyday literacy (Table 2).

Table 2. An example of a prompt card

Recording our information

In the last cycle, I was the research director. I wrote the meeting agendas. I helped Joseph run the meeting sessions. I helped him to teach Lauren about research and how to do it. I helped them to collect data about L's everyday literacy. I helped them to analyse the data. I wrote research diaries with events and reflections about the research (Fig. 5). I was proud of myself to be able to be a researcher and to teach the others how to be researchers too. I was proud to be able to write about the research. Keeping a research diary is important because it is a tool that lets the researchers record what we did, how we did it, what we thought about it and what it meant. We had a How To guide about how to write or record a research diary. We developed this guide together. We had two versions – one had writing and the other had pictures instead of writing. I used a written research diary but Joseph and Lauren did not like to write so they recorded the research information and their thoughts on voice recorders and video logs. At the start of each meeting session, we shared our diaries and talked about them. This helped us to think about our information and this was part of the way we analysed our data. The research diaries also helped us to remember what we had done in the other sessions. We also used our research diaries to make notes about what we still wanted and needed to do for the research. We used research diaries to help talk about any issues and to help us make decisions and come up with solutions to problems. Figure 5 shows part of one of my research diaries.

Analysing data

I learned to work with our information. This is called data analysis. When I first started to be a researcher, Michelle and I analysed data together. Now, I can do it by myself. I analysed the data by myself and put it on a table. Table 3 shows an example of a part of my data analysis (Table 3).

Table 3. Part of Emma's data analysis

This analysis was from the first part of the research when we were learning how to do research and be researchers. We looked at what we did, how we learnt to do research and the things that worked well. We did this together by brainstorming and writing in a table on the whiteboards. I loved doing this so much that I went home and created my own data analysis table on the computer (Table 3). We did different data analysis in the second part of the research. This analysis was about the data we collected about our literacy. This is how we did it…

The week after we collected information about our everyday literacy, we went back to the university. We watched the video recording that we had recorded when we were observing and prompting about the partner's everyday literacy. We used the Combined Literacy Scaffold (see Table 1) that Michelle and I developed together. We had tried lots of different scaffolds before creating this one. The other scaffolds were too hard and too long. This one worked perfectly. To help us to fill in the scaffold, we wrote the headings as questions on the board. These were also our research questions. After we watched the video recording, we used the questions to talk about what the research partners did, the things they were good at, the things they found hard to do and what they thought about themselves. We also talked about what the literacy event was, and what literacy elements were used. We always kept a record of the date, location and setting. Now we are looking at all the answers and trying to find themes. These are things that are the same. This will help us understand what literacy is used and how it is used and whether the research partners do the same things and have similar difficulties when they use everyday literacy. This will help us to find ways to make literacy in the real world easier for people with learning disabilities to access.

Conference presentation

One of the best parts about being a researcher was going to the ASSID conference in Brisbane and sharing our research with others. We spent many weeks working together to create and practice power-points to do a team presentation about our research at the conference. It was so much fun presenting my power-point but I did not really like the question time at the end (Fig. 6).

Writing an article: How we wrote this article

In one of our meeting sessions, we were talking about different ways that we could record information. One of the ways we talked about was a photograph journal. I talked about how I love to do scrapbooking and that I would like to use scrapbooking to tell a story about the research. Michelle thought it was a great idea. We started to take photographs of different parts of the research. It took months for me to do it but when it was done I brought it to a research session and shared it with the others.

In another research session, we had been talking about ways to share our research with others. We had a conference coming up where we were going to present our research stories and Michelle had also talked about research articles. Michelle came up with the idea that I could use my scrapbooking research story as a starting point for writing my own research article. She said that the British Journal of Learning Disabilities published articles that were written by people with learning disabilities. So we looked at some of these articles to see how other people had written an article. One article was written with lots of drawings with plain language writing next to the drawings (Garbutt et al. 2009). Another had pictures, photographs and lots of writing and it was written by a lot of people together (Townson et al. 2004). Michelle asked how I wanted the article to look. I wanted to have my scrapbooking with photographs and some writing about the photographs but I also wanted it to look like an academic article because I wanted it to be for people with and without learning disabilities.

So after a lot of talking, we decided to do both and that is why we have lots of writing with photographs of my research journey. The way we wrote it is by collaborating. We both shared ideas about what to write and what order to put it in. I would tell Michelle my ideas and she would talk about them with me to make sure she understood what I wanted and what I meant. Then, because talking language and reading language is different, she would say back my ideas in sentences that we could write and I would choose which ones to use. Because writing and typing takes a long time for me to do and makes me tired, M scribed (typed) what I said.

When we had all the ideas down, we read it back and made changes to make it sound better. We added bits and removed some bits that we no longer wanted. We moved bits around to different places to make it flow better. This is called editing and revising. We did this a lot of times. When we were happy with what we had written, we showed it to another person at the university to see what she thought. She gave us some ideas and suggested some changes. We talked about what she had said and then edited our draft again. Finally, when we were happy with what we had, we sent it away to the British Journal of Learning Disabilities to see whether they thought it could be published. After a long time, they sent an email to say that they liked the article but there were some changes they thought we should make to make it even better.

Together, Michelle and I read and talked about their suggestions and made lots of changes to make the article better.

Writing an article takes a long time but I was very interested in learning how to do it and I feel very proud of myself to be an author of a journal article.

Understanding research

I now understand what research is. Before we did any research, M made all the hard stuff about research, like theories, methodologies, methods and tools accessible to us. She used the big words but also used plain language with them. We made a ‘research words’ booklet to help us remember the research words and what they meant. For example, my favourite methodology (a type of research) is ethnomethodology (eth-no-meth-od-ol-ogy) which means looking at a small part of the real world. I loved that word so much that I learnt to spell it aloud! The theories are the ideas that we agree with about the research, like theories about disability and literacy. The methods are the ways we do the research and collect our information and the tools are the things, like a video camera and scaffolds that we use to help us collect and record our data. Michelle made all this information easy to understand and she made power-points with dot points and lots of photographs and pictures. I think this worked really well to teach us about research, what it is and how to do it.

Michelle told us that in other projects some of the researchers taught the people with learning disabilities about research and taught them some skills, but some projects did not have any teaching in them at all.

I think it is really important to learn about research before you go out into the real world to do research. If you do not learn about research first, you will not know how to do it and you will not understand about what you are doing. Learning about research first worked so well, and we really loved learning it, that Michelle only taught me in cycle 1. I was then the teacher in cycle 2 and Joseph and I taught together in cycle 3. At the end of cycle 2, we changed the power-points together to make them even easier for the last partner to understand.

Other things I have learned

This research project has helped me to learn about doing research. When I started, I did not know anything about research or how to be a researcher. Now I can do so much. Here is a list of some other things I learnt from doing this research. I can…

Reflections

I feel very confident doing this research. In the future, I hope I can write more articles and do more research. I am proud of myself for learning so much and becoming a researcher. Doing the research and writing an article have taught me that even though I have intellectual disability, there is nothing I cannot do.

I really am a superwoman!