5-stage process for social media change at #CSUN12

Interview Participant Using Social Media and Assistive Technology

Interview/observation participant using social media and assistive technology

Short Title: aOSN-cp model to assist social media change

Strap line: An aOSN-cp model to support online social network users with cerebral palsy when providers introduce change.

Conference:¬†27th Annual International Technology and Persons with Disabilities Conference (CSUN’12)

Type: Lecture | Session Length: 60 minutes

Date/Time: Friday, March 2, 2012 – 4:20 PM PST

Location: Madeleine CD, 3rd Floor

Session webpage: http://bit.ly/MakaylaLewis-CSUN12

Internet use in the United Kingdom is almost the highest in Europe, with over 65% of households accessing the Internet […]. Forty-nine percent of these users are using online social networks (OSNs) like Facebook, Twitter, Bebo and YouTube and are now making over 24 million visits a month [1, 2, 3]. Nevertheless, OSNs are often directed at people without disabilities. Existing human-computer interaction (HCI) literature suggests that OSNs have the potential to help people with cerebral palsy (cp) to overcome their mobility, access and communication limitations to enable communication independence [4, 5]. As conventional communication methods like face-to-face communication, telephone communication and text message communication are often difficult to use and can limit the opportunities for these users to engage in successful socialization […]. Therefore people with cp often see online communication especially OSNs as an attractive alternative [5, 6]. In spite of this, there have been no studies that solely look at OSN experiences and challenges faced among users with cp. The goal of this research was to address this gap in the research to make this community visible.

An exploratory interview study was carried out. The study explored the experiences and challenges faced when users with cerebral palsy use OSNs. Fourteen semi-structured interviews were carried out consisting of participants with different types of cp. The study found, among other factors, that abrupt and frequently changing online social networks slowed down and or prevented use [4]. For example during September 2011 Facebook.com introduced three functional changes that included a revamped friend lists, real-time news ticker and a subscribe button. Subsequently during the following month further changes that included a major overhaul of user profiles, new applications for playing music and watching videos were deployed. Such changes often affect assistive technology resulting in users relearning the number of clicks when using switches, making interacting with OSNs time-consuming. In spite of this, the study also identified that the technology is a vital way for users with cp to communicate with friends and family and would continue to play a key role within their lives.

To further explore the affects of abrupt and frequent changing OSNs a longitudinal web 2.0 monitoring and analysis study was carried out. The study identified how OSN Twitter.com changes, specially # Old Twitter to # New Twitter, are introduced, their affect on users, and the factors that encourage change acceptance and non-acceptance. More than 950,000 tweets mentioning #(hashtag) New Twitter were posted between September 2010 to February 2011, however the 60-minute lecturer will focus on 600 tweets from key discrete occasions: peaks. The results of the study were used alongside common change management approaches and theories to develop an innovative 5-stage process for online social network change (aOSNcp) for OSN change agents to follow. The process defines the requirements for successful online social network change including the OSN change agent responsibilities before, during and after the change.

The lecture will summarize the exploratory interview study; introduce the key inhibiting factor and the examination of New Twitter; and present the aOSN-cp process as a method to assist online social network providers during user interface change process without alienating users with cp. A video of Makayla‚Äôs lightning talk ‚ÄúDeveloping a 5-stage process for online social network change: a focus on users with cerebral palsy‚ÄĚ at January‚Äôs Web Accessibility London meetup has been made available to summarize this lecture.

[vimeo http://vimeo.com/37237102]


[1] eNation reports РSocial networking sites lock out disabled users РAbilityNet. Available: http://www.abilitynet.org.uk/enation85 [1/28/2011, 2011].

[2] DUTTON, W.H., HELSPER, E.J. and GERBER, M.M., 2009. The internet in Britain: 2009. Oxford Internet Institute.

[3] OFFICE FOR NATIONAL STATISTICS, 2009. Internet Access 2008 Households and Individuals. Office for National Statistics.

[4] LEWIS, M., 2010. Cerebral palsy and online social networks, Proceedings of the 12th international ACM SIGACCESS conference on Computers and accessibility, 2010, ACM, pp. 243-244.

[5] BALLIN, L. and BALANDIN, S., 2007. An exploration of loneliness: Communication and the social networks of older people with cerebral palsy. Journal of Intellectual and Developmental Disability, 32(4), pp. 315-326.

[6] DOBRANSKY, K. and HARGITTAI, E., 2006. The disability divide in Internet access and use. Information, Communication & Society, 9(3), pp. 313-334.

[7] THOMAS, D.R., 2006. A general inductive approach for analyzing qualitative evaluation data. American Journal of Evaluation, 27(2), pp. 237.


[Mini Blog] 2010 in Review


With 2011 now underway I thought I would briefly summarise 2010. It was a busy yet creative year were I¬†predominately¬†focused on my PhD research, this seemingly¬†ENDLESS task will likely consume much of my time this year. I achieved a lot: completion of 2¬†studies: interviews and observations including research ethnic’s (and we all know how lengthy this can be), MPhil to PhD transfer examination, countless paper submissions which led to a major conference acceptance, and constant academic reading among other items. 2010 was also a year for sharing my research and reaching out to charities and disability and accessibility community via presentations and seminars, HCID CP Day, demo session and most surprisingly an unconference. These opportunities enabled me to¬†meet and work alongside fantastic people whom had different experiences and insights of which I highly value.¬†2010 also presented the opportunity to regularly volunteer at user-led¬†organizations¬†directed at young adults with disabilities, learn British Sign Language (BSL) and par take in charity running e.g.¬†Sports Relief 3 Mile run, Race for Life 5k and¬†British 10K run. Furthermore, personally 2010 allowed me to expand on some of my ‘odd’ interests mainly concerning all-things Apple, Wii gaming, Star Wars, Vampires (books, films and TV shows etc.) and most importantly Guinea¬†Pigs. I can now¬†officially¬†state that most, if not all, of my social media friends are aware of these ‘interests’ and are likely frustrated with my constant chatter; but having obtained a¬†overshare badge on foursquare, this is unlikely to change – sorry :). But 2010 also¬†presented challenges e.g. constant Crohn’s disease flare ups, a family¬†bereavement, a distressing motorbike accident, being a carer with limited support etc., such challenges did not prevent me from pushing forward but provided strength and¬†persistence – these acquired attributes are highly valued and will be undoubtably drawn on in the coming year.¬†I hope that 2011 will bring exciting web accessibility research and technology, ¬†new apple products ūüôā and most importantly happiness and success. I will end this mini blog by wishing all those who read this a prosperous 2011.


Experiencing online social networks with #cerebralpalsy at #ASSETS10


After a highly enjoyable, yet lengthy, process of collecting interview data that investigated computer, internet and online communication use among adults, age 18 and above, with cerebral palsy (2009/10). I began the publication process (central to all PhDer’s) consisting of countless presentations, seminars, talks, round table discussions etc. however an “academic” conference paper was proving illusive. Until July, when I was presently surprised that my work on motor disabilities concerning accessible social media appeared to intrigue #ASSETS10 (The 12th International ACM SIGACCESS Conference on Computers and Accessibility). I was awarded an ACM SIGACCESS Scholarship to attend the conference and my poster paper “cerebral palsy and online social networks” was accepted. This coming Monday (25 October 2010) during poster session 1, I will be presenting a poster concerning my 2009/10 study, were I will discuss:

… the experiences and challenges faced when people with cerebral palsy use online social networks (OSNs). Fourteen interviews were carried out consisting of participants with different types of cerebral palsy. The study identified the reasons for use and non-use and also discovered key themes together with challenges that affected their experiences. For example abrupt and frequently changing online social networks were reported to slow down or prevent use… In spite of this, participants reported that OSNs were a vital way to communicate, and even though these themes and challenges are occurring, they indicated the technology would continue to play a vital role within their lives. To read more about my work please go to:¬†http://portal.acm.org/citation.cfm?id=1878803.1878852

ASSETS10 Cerebral Palsy and Online Social Networks Poster

#ASSETS10 Cerebral Palsy and Online Social Networks Poster

As #ASSETS10 appears to promote itself as a forum concerning “computing and information technologies to help persons with disabilities and older adults” I look forward to engaging with said community through discussions, innovative demonstrations and hopefully “engaging” presentations.

A follow-up blog to follow, watch this space.

iPad, can it benefit the cerebral palsy community? (@cityuni_hcid Demo Session)

Centre HCID using iPad

@cityuni_hcid researchers trying out Tap Tap Radiation

With a To-Do list that increases¬†daily,¬† I often demote tasks that¬†aren’t directly related to my PhD, unfortunately this has been one of those tasks. I was asked to write a blog about a demo session I ran at @cityuni_hcid¬†on 8th June 2010, better later than never I guess.

—¬†On May 28th 2010 I brought my iPad to @cityuni_hcid were it sparked considerable interest, I suspect it was because at the time it was one of the very¬†few within @CityUniLondon. For the next week I found myself answering the same questions:¬†what do you use it for? what sort of apps are¬†available? is it worth spending ¬£427+?. As a result, I decided to run a small demo session inviting @cityuni_hcid researchers to try the iPad and ask questions all in one go.

To ensure the session was¬†interesting, esp. for researchers waiting to use the device, ¬†the following was¬†asked: iPad, can it benefit the cerebral palsy community?. It’s purpose was to enable the researchers to identify potential apps and or areas the iPad could be used to benefit users with cerebral palsy.¬†To stimulate discussion I carried out an impromptu study that observed 2 iPad users with cerebral palsy. Photos and video clips were recorded via my iPhone 3GS and littered¬†throughout the @cinterationlab. Unsurprisingly, the video clips appeared to encourage discussion more so than the photo’s, so I thought I would share it with you…

(Right) Photo's of the 2 iPad users with cerebral palsy using various apps and iPad accessories. (Left) A list of some of the discussed benefits.

Some of the benefits identified included: rehabilitation e.g. PocketPond app increased dexterity over the course of the observation; eLearning e.g. iBooks app and Memory Cards app provided independent learning; independent input especially when shopping (inbuilt Safari) and communicating was discussed by both participants as key to their iPad use; arts e.g. Granimator app  provided creativity and obviously entertainment e.g. Need for Speed Shift app.

There are many other benefits discussed and considerably a lot more that I can think of now, but it would be interesting to know what you think: iPad, can it benefit the cerebral palsy community?. Please feel free to leave a comment.