Research

Conducting a study and need participants or feedback?

If you believe your research goals, methods, and topic are in alignment with the philosophies of the disability rights movement, neurodiversity, critical disability theory, or disability studies; you are actively seeking research participants or to engage members of the community in feedback as part of a collaborative or community-based participatory process; and you'd like to see information about your study included on this page (where a good number of Autistics, disabled folks, and allies are likely to come across it); send an email explaining the topic, purpose, and methods of your study, as well as the information you'd like posted on this page, to lydia@autistichoya.com.

Last updated on 18 September 2013.


Developing Research: Disability in Romantic Couples

This is a developing research project about disability in romantic couples.

This present interview phase may serve to help me further investigate my question and method and not be published. If data is published, your permission will be sought at a future date.

In many relationships, one partner has a disability and the other does not. I am seeking to interview both partners separately to better understand how they perceive disability affects various aspects of their lives together (e.g. socializing, household duties etc) and what, if any, differences there are in their perceptions or the significance they attribute to these effects.  This is not evaluative, but attempting to better understand if there are any themes among couples.  Information such as this will contribute to better understanding of disability and intimate relationships, family studies, and societal impact on relationships of this description.

I am a Ph.D. student at Syracuse University where I study the Cultural Foundations of Education and Disability Studies.  I am also Deaf myself and in a relationship with a hearing woman, which contributes to my motivation for conducting this study.

If you agree to participate, you certainly can withdraw from participation at any time without penalty or choose not to respond to any particular question. Interviews will last about an hour each and I am more than happy to provide refreshment and any accommodations necessary for the interview. All information will remain confidential and no personally identifying information will be published or disclosed to other parties.

If you have any questions, please feel free to ask.  I thank you in advance for your assistance.

Steve Singer
sjsinger@syr.edu


Interview Study: Faculty Members with Disabilities in Higher Education



Dear Colleagues,

We are conducting a study to understand faculty members’ experiences with disability disclosure in higher education settings. This study is IRB-approved, with the University of Delaware serving as the IRB of record.

As part of this study, we will interview faculty members at a variety of higher education institutions, in different disciplines and areas of study, and from all ranks and types of faculty employment, and we are recruiting interested participants who would be willing to be interviewed about their experiences negotiating disability in academe. The remainder of this letter provides a brief overview of what we might ask of you should you be interested in participating, and gives you an avenue for contacting us to ask further questions.

The first stage involves completing a brief questionnaire asking for demographic and biographical information in order to help us determine our interview pool (http://www.surveymonkey.com/s/9SDNFQ3). We will use this information to help us achieve diversity sampling and thus include a broad range of experiences, positions, and intersectional attributes in our study.

We estimate that this survey, administered via Survey Monkey, will take less than five minutes to complete. Your responses will not be anonymous, but all information from this survey will be kept confidential and only available via password-protected Survey Monkey account to the two researchers conducting this study—Stephanie Kerschbaum and Margaret Price. Results of this survey will be used for sampling purposes only; they will not be analyzed as part of the interview data. We will destroy survey responses when sampling for the interview study is complete.

The second stage of our project, should you be selected as part of our sample, will involve an interview in which we will ask you about your experiences negotiating disability in academe. In keeping with our aim of conducting “accessible interviews,” interviews will be conducted in participants’ and researchers’ preferred modalities, ranging from in-person to Skype to internet-messaging to asynchronous email exchanges. One of the questions on our introductory survey will ask you to identify your preferred means of participating in an interview.

If you have any questions, please contact us using the information below. If you have questions related to the IRB process, please contact the University of Delaware Institutional Review Board at 302-831-2137 or via email at hsrb-research@udel.edu.

Warmly,
Stephanie Kerschbaum, kersch@udel.edu, 979-204-7247 (text only)
Margaret Price, mprice@spelman.edu, 404-849-8593 (voice or text)






Seeking Autistic adults for study on self-designed supports

WHO: Participants will meet individually with the researcher to describe their experience of setting goals, making decisions, and functioning on their own. Participants who meet the following criteria will be considered for this study:

1. At least 21-years-old.
2. Diagnosis of autism spectrum disorder.
3. Able and willing to speak with this researcher for up to 1.5 hours.
4. Individuals who have a legal guardian will be excluded from the study.
5. Individuals who have a physical disability, such as hearing, visual, or mobility impairment, in addition to their autism spectrum diagnosis, will be excluded from the study.
6. Participants will not be excluded based on race, gender, socioeconomic status, or ethnic origin.

BENEFIT: THERE WILL BE NO DIRECT BENEFIT TO YOU FOR PARTICIPATION IN THIS STUDY. HOWEVER, understanding the experiences relating to making decisions, setting goals, and independent functioning of adults with autism spectrum disorders (ASD) may help identify what they need to increase their independence. This study may also provide recommendations for individuals with ASD, their family members and professionals supporting them.

COMPENSATION: Enter to win a $100 gift card to Amazon or Target (participant’s choice!)

CONTACT: To participate, please contact Elzbieta (Ela) Jarzabek, M.S., by phone at (267) 210 9785 or by email at jarzabeke@chc.edu. Dissertation chairperson contact information: Dr. Scott Browning, (215) 248-7149, scobrown@chc.edu.



Research investigating how physically disabled people and non-disabled people interact


Dear all,

I am a 2nd year PhD student at Canterbury Christ Church University. For my doctorate I am investigating how non-disabled people and physically disabled people interact with each other. More specifically, the thoughts and emotions that can precede and follow short interactions between these two groups. My interest in this topic stems from both the euthusiasm I have for my field and from my own experiences as a person who has cerebral palsy.

I hope it is ok to post a link to my study here. I am looking for physically disabled participants to complete a 15 minute survey. During the survey you will be presented with two scenarios which ask you to imagine interacting with non-disabled people in two different situations. You will then be asked some questions regarding your thoughts and feelings towards each scenario. Some participants will also be given additional information about the study context before responding to questions.

https://cccusocialsciences.qualtrics.com/SE/?SID=SV_3pEqKHgCu50XC61

In addition, I would be grateful if my survey could be forwarded to any other people who might like to participate. I would also welcome advice on other places where I could post my survey.

I am very happy to be contacted by email ( mark.carew@canterbury.ac.uk ) in relation to my research and I am happy to participate in the research of other people if needed.

Thanks.

Mark





Call for informants: 
History of PA services in the UK


My name is Steve Graby and I am a postgraduate student at the University of Leeds Centre for Disability Studies. My MA dissertation is going to be a history of personal assistance services for disabled people in the UK. This will also provide the foundation for my PhD thesis, which will be a critical examination of PA work as a form of employment, informed by the politics of the Disabled People's Movement and the anti-capitalist movement. My interest in the subject comes from being an autistic disability activist who has also worked as a PA.

I am looking for people to interview for my dissertation who were actively involved in the development of personal assistance services for disabled people in the UK. I am interested in both factual accounts of how PA services were developed and opinions or analysis from those who were involved.

The interview should take about 1-2 hours and can be done in person at your home or any other place of your choice, over the telephone or via Skype or e-mail, depending on your preferred method of communication and access needs. Interviews will probably take place in June or July 2013.

While this research is for an MA dissertation, I also hope to be able to publish it in an open access venue so that it can reach and be of benefit to the widest possible audience.

If you are interested in participating, or would like more information, please contact sgraby@googlemail.com. Also, if there is anyone else you know who you think could contribute usefully to such a history, I would be very happy for you to pass my contact details to them, or vice versa.

Thanks

Steve Graby




Participants required for a study on asexuality and disability

Hi everyone,

My name is Karen and I’m a sociology postgraduate student at the University of Glasgow, Scotland. For my Masters dissertation, I am conducting research on the topic of asexuality and disability: specifically exploring the experiences of people who self-identify as asexual and have a disability, and looking at the ways in which asexuality and disability might ‘intersect’. I’m recruiting people to take part in an online (individual) interview with myself – and I was hoping that some of you might be interested in taking part!

I am interesting in hearing from folks all along the asexuality spectrum, and of all genders, relationship orientations, nationalities etc. I am also working with a broad definition of ‘disability’ – what is important is that you consider yourself to be a disabled person, or that you consider yourself to be disabled in some way.

It’s also really really important that you are over the age of 18!

If you think you might be interested, you can send me an email at 0705067c@student.gla.ac.uk and I’ll then send you a plain language information sheet which will give you a lot more details about the study (as well as my full name, contact details for my supervisor and University ethics committee). Once you have read that you can decide whether or not you want to take part. By contacting me you are in no way committing yourself to taking part - and if after reading the information sheet you decide that it is not for you, then that’s absolutely fine too! I’m also more than happy to address any questions or concerns that you might have about the research.

Thanks very much for reading this – and I hope to speak to some of you soon!

Best wishes,
Karen




Call for Participants in Disabled Identity Study

I wish to interview women between the ages of 18-50 who meet the following criteria:

(1) have a visible physical impairment; (2) self identify as disabled; (3) consider disability an important part of their identity or self concept; and (4) were diagnosed with a physical impairment by the age of 6.

This research focuses on how women with physical impairments develop positive identities that incorporate disability. The purpose of this exploratory qualitative research study is to examine the narratives and life stories of women with visible physical impairments who self-identify as disabled and demonstrate identities of resistance. This research may impact the process and understanding of social identity development in the lives of women with physical disability. Through narrative inquiry (life stories), disabled women’s voices will be heard in both their complexity and discursiveness. These voices are not the passive stereotypes of disability, but an emerging resistance that may potentially revolutionize how women with disabilities feel about their lives, bodies, and ultimately, themselves. I hope that the knowledge shared by participants will help advance knowledge in disability studies and influence the practice of psychologists, and other paraprofessionals in mental health.

Participants will answer questions related to their current conceptualization of disability and the role of intersecting social identities in the creation and maintenance of identity and self-concept. Participants will be asked to describe positive and negative aspects of living with impairment/disability. Participants will identify situations where they have agency and autonomy.

Interviews (which should not take longer than 2 hours) can be conducted in person (I can travel to you if you are located in the Central Florida/Greater Orlando area), by telephone, or by Skype/webcam. Participant language and communication styles will be accommodated. I would be happy to provide a copy of the interview questions and the informed consent form (ICF) in advance of the interview.

If you fit the study criteria and would be willing to be interviewed, please contact me at my email address:
scoffman@email.fielding.edu

If you would like more information about this research, please contact me at the email address above and I will send you more information about the study.

Thank you in advance for your time and attention to this posting.
Stacey L. Coffman-Rosen
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Stacey L. Coffman-Rosen, Doctoral Candidate
Human Development
School of Human and Organizational Development
Fielding Graduate University
356 Copperstone Circle
Casselberry, FL 32707
(407) 699-1491




Attention TAs/GAs with a disability:

Dear Colleagues,

I am a doctoral student in Special Education and Disability Studies at Syracuse University located in Syracuse, New York.  I am conducting an IRB approved research study for which I am seeking participants.

Disability is a human difference that occurs among multiple populations across all locations of the world. Individuals’ experiences with disability are diverse and these experiences are vitally important to conversations about equal rights, accessibility, employment and education. The purpose of this research study is to understand the experiences of teaching assistants and graduate assistants with disabilities in higher education.

Are you a teaching assistant or a graduate assistant with a disability?

This study is seeking assistants with disabilities from departments throughout the university. If you are a college teaching assistant or graduate assistant with a disability and are willing to talk about your experiences then I would greatly appreciate the opportunity to speak with you. Your opinion is important and your personal information will be kept confidential. The interview will take about one hour of your time. If you need any disability accommodations or alternatives to speaking over the phone (e.g., using Skype or VP) then I’d be happy to do that.

If you would like more information about this study, please contact me at the following e-mail address: mldamian@syr.edu.  I will gladly send you the consent form and sample interview questions.

Thank you in advance for your time and consideration of this posting.  If you know of others that may be interested in participating in this research, I ask that you kindly forward this e-mail. To participate in this study, please contact me at: mldamian@syr.edu

Best,
Michelle L. Damiani





SEEKING YOUNG, AUTISTIC ADULTS FOR AN INTERVIEW

Are you a young, autistic adult aged 18-25?  Are you willing to share your opinions and experiences regarding autism therapies and therapists?  You can be interviewed in-person, over the telephone, or even through internet-based communication like emailing or chatting – your choice!   

I am a doctoral student in clinical psychology at the Wright Institute in Berkeley, California, and I am looking for volunteers to participate in my confidential dissertation study eliciting the opinions of young, autistic adults about the desirable and undesirable qualities of autism therapies and therapists.

This is an exciting opportunity for individuals to share their stories and ideas and contribute to a scientific literature regarding autism interventions!

In order to be eligible, you:
  1. Must be between 18 and 25 years of age.
  2. Must have received intervention or therapy as a child due to having an autism spectrum disorder, such as from a psychotherapist, occupational therapist, speech therapist, special educator, or other person from a “helping profession.” 
  3. Must have been diagnosed with an autism spectrum disorder (including Asperger syndrome) by a licensed mental health professional or medical doctor. 
  4. Must be able to communicate independently in oral form, written form, or through augmentative communication.  
  5. If you have a conservator, there must be verbal and written consent from both the conservator and yourself in order to allow for potential participation in the study.

If you want to participate, you will be asked to:

Review and sign a consent form, complete a brief demographic questionnaire, and take part in an individual interview (60 – 120 minutes).

Please understand that you will not be compensated and that extensive measures will be taken to protect your confidentiality to the full extent of the law.

If you are interested in participating, or if you know of individuals who may want to participate, please contact me at (202) 236-9830 or aklein@wi.edu.

Thanks so much, 
Alex Klein, M.A.



Sexuality and Citizenship on the Autism Spectrum

Hi, I am Jessica Penwell Barnett, a PhD student at the University of Windsor. I am recruiting participants for my dissertation study on sexuality in the lives of adults on the autism spectrum. http://www.uwindsor.ca/people/barnettj

This study will build knowledge about sexuality from the perspective of autistic people. It will also contribute to discussions of sexual rights. Participants will receive a $25 gift card to Amazon. Participants must be 18 years or older and live in the United States.

If you decide to participate in this study, you will complete a brief survey and an online interview. You will be asked to refer your romantic partner, if you have one, for a follow-up interview. You will also be asked to refer your main support person (friend, parent, paid worker, etc.) for a follow-up interview. Follow-up interviews are intended to provide information about important relationships in your life and how people close to you think about autism and sexuality.

Please go to http://www.uwindsor.ca/people/barnettj for more information about the study’s aims and to get started!

Jessica Penwell Barnett barnettj@uwindsor.ca is conducting this study. I have received clearance from the University of Windsor Research Ethics Board.






Autism, Asperger's, and Roleplaying

I am part of an independent research study on autism, Asperger's, and roleplaying that began in July 2011 with an exploratory survey. The exploratory survey, which received about 200 responses, was intended to help us determine where we should be focusing our examination. The exploratory survey asked participants questions about some of their habits and behaviors related to roleplaying with an extremely heavy bias toward text-based roleplaying. Based on the responses and feedback for the first exploratory survey, we have been developing a second, more focused survey, which is intended to further explore the habits, attitudes, experiences, and behavior of Autistic roleplayers compared to the habits, attitudes, experiences, and behavior of non-Autistic roleplayers.

We are particularly curious about potential answers to the following investigation questions:
  1. How might Autistic and non-Autistic roleplayers differ in their primary motivations to roleplay, if at all?
  2. How might Autistic and non-Autistic roleplayers differ in how frequently they roleplay, if at all?
  3. How might Autistic and non-Autistic roleplayers differ in their preferred types, styles, or mediums of roleplaying, if at all?
  4. How might Autistic and non-Autistic roleplayers differ in their negative experiences with or as a result of roleplaying, if at all?
  5. How might Autistic and non-Autistic roleplayers differ in their positive experiences with or as a result of roleplaying, if at all?
  6. How might Autistic and non-Autistic roleplayers differ in their engagement with both roleplaying-related and non-roleplaying-related social opportunities facilitated through roleplaying?
  7. Are there any correlations between roleplaying and negative past experiences, and or are there different rates of correlation between roleplaying and negative past experiences for Autistic and non-Autistic roleplayers?
  8. Are there any common demographic denominators disproportionately represented among the sample of roleplayers who participate, including the prevalence of self-identified disability? 
  9. How might Autistic and non-Autistic differ in their roleplaying-related behaviors and habits, if at all? 
In order to be eligible to participate in this study, which consists of completing a survey in the form of an online questionnaire, you must have roleplayed in at least one of the following forms at least once within the last twelve months:
  • Text-based roleplaying forum, message boards, or chat server
  • Massively Multiplayer Online Roleplaying Game (MMORPG) or MUD (Multi-User Dungeon)
  • Virtual reality or simulated reality, such as Second Life
  • Pen and paper or tabletop roleplaying game, such as Dungeons and Dragons
  • Text-based roleplay or collaborative writing over email or real-time text editor, such as etherpad or Google docs
  • Roleplay over social media, such as Facebook or Tumblr
  • Live Action Roleplaying (LARP) or cosplay
  • Informal, improvised "pretend" or imaginary games
  • Roleplaying video games
You must also either be 18 or older in order to consent to participate in this study, or you may be between 13 and 18 with parental or guardian consent. The survey contains questions that may ask about sensitive information or topics (consider this a general trigger warning) per the questions listed above. Absolutely no personally identifiable information will be collected from you at any time during this survey, including your IP address, location more specific than country, address, identifying numbers, name, or contact information. We will not be able to connect your answers with any personally identifying information. The raw data will never be published or released in such a way that isolates each individual's responses. While we intend to seek publication of any findings in a scholarly journal (no guarantee on publication), we will only publish the survey responses in aggregate (ex. X% of Autistic roleplayers vs. Y% of non-Autistic roleplayers indicated that they have ever been a GM, Game Master, DM, storyteller, or narrator in a roleplay.) We may identify roleplayers as falling into four sub-sets of the sample—autistic without other disabilities, autistic with other disabilities, non-autistic but with other disabilities, non-autistic and without any disabilities—if there are statistically significant differences in responses on individual questions or sets of questions.

The second, more focused survey that explores these nine investigation questions in detail was released on 20 August 2012. We would love to have responses from both Autistic people and non-Autistic people. In the second survey, we will be asking more focused questions to elicit information about all types of roleplayers, though we have maintained a focus toward text-based types of roleplaying and collaborative writing. We need any and all roleplayers to participate, whether they have disabilities or not. Here is the link to the survey. If that link doesn't work, try copying and pasting this URL into your browser instead—http://goo.gl/plVdu. The survey may take around an hour to complete if uninterrupted, but you may pause the survey for as long as you want or need and for as many times as you want or need, provided that you do not close the tab or window or shut down your computer.

If you have any questions or concerns about the survey, please don't hesitate to contact us at autismandroleplaying@gmail.com. We are Lydia Brown and Ylanne So.