Accessible summary• We are people with and without learning disabilities doing research together.• In this paper we talk about the good bits and the bad bits of doing research together. SummaryIn our paper we talk about what it is like to be a group of people with and without learning disabilities researching together. We describe the process of starting and maintaining the research group and reflect on the obstacles that we have come across, and the rewards such research has brought us. Lastly we put forward some ideas about the role of professionals in such a group that we hope people might find useful.

Very little is known about the online habits of people labelled with intellectual disability. What little information there is focuses more on demographic descriptors rather than any analyses of issues specific to that group. Hence the vast majority of the literature is firmly focused on more generic issues as they affect the general population. Some very few disability dedicated studies, however, have examined homepages maintained by individuals who live with Down syndrome. Here at least is evidence of a field of inquiry that recognises there may be particular aspects of web based communications that deserve special interest. The dynamics of web based communications are fast moving and the relatively static homepage has subsequently given way to Web 2.0 technologies. Here the recent and exponential increase in the popularity of blogging as a means of mass communication has attracted much comment in both popular and specialist quarters. Its ease of use and near universal availability has prompted massive sociological inquiry. But again the profile of people living with intellectual disability is absent from the debate. Our study reports on a project in which adults with intellectual disability were assisted to access the web in general, and the ‘blogosphere’ in particular. Our focus is on the means and methods by which the participants were able to manage their off and online identities. We look at the language employed, the layouts used and the way the online messages and postings reflected or distorted the actual lived experiences of these proto-bloggers. Notions of authorship and audience also contribute to the debate as these issues raise questions about sense of self, disability as a cultural construct and our ability to negotiate the increasingly important virtual world of the web.

Accessible summary• People labelled with learning disability are now more involved in research that is about them and their lives. • When research about the lives of people labelled with learning disability gets published in journals the accounts are written by professionals or academics. • Working and writing together is a good idea but we all need to decide on who is in control. • Being in control of language often means being in control. SummaryCollaboration within the research and publishing process provides opportunities for shared learning and increased knowledge production and dissemination. It can also provide opportunities for conflict if the contributors are divided over issues of authority and authorship. While this situation can be managed, the potential for misunderstanding to arise is heightened when the combination of academics/ professionals and individuals labelled with learning disability work together. The scenario described here outlines some of the difficulties that can threaten successful collaboration. Possible remedies are suggested.

(2014). Breast cancer information and support needs for women with intellectual disabilities : a scoping study. 23 (8), 892-897. whilst 'reasonable adjustments' were being made and there was evidence of good practice, they were neither strategic nor systematic. Participants suggested that future research should focus on devising protocols to advise on the legal, ethical and clinical imperatives so that clinical governance in this area is assured. Copyright and re-use policy Conclusions:There remains a dearth of research or practice guidelines at every stage of the breast cancer care pathway for women with ID. This may arguably lead to late diagnosis, sub optimal treatment and management and overall survival rates for this group. Further research is needed to understand the specific information and support needs of both women with ID (and their formal and informal carers) through the breast care pathway and to identify appropriate protocols, strategies and interventions in order to address these. words

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