A. Ethical Issues for Me
Keeping a blog about the life of a disabled person who cannot give ‘informed consent’ clearly raises ethical issues. Carers of people with limited or no communication (as is the case with Dylan) have to negotiate ethical issues on a daily basis. Concepts such as ‘Best Interest’ are helpful and can provide guidance but ultimately some decisions have to be hazards, made case-by-case and kept under continual review. This is the approach I intend to take here.
Ethical issues will be considered in relation to each new piece I post. By asking whether Dylan would be comfortable with the piece being published I will adopt a dynamic and evolving approach to ethical practice. It can be hard to make a judgement about what to share and what not to share, but I hope that Dylan would be comfortable with the decisions I make. I believe that if I do justice to my son in writing the blog posts, they should not only protect his dignity but enhance it. My intention in keeping the blog is to enrich Dylan’s life by creating a space in which I can reflect on his life. I hope that the potential benefits of that process are, indeed, in Dylan’s best interests.
Adopting the standard four-fold framework used in ethical practice, I would summarise key issues as follows:
1. Beneficence (benefits)
- Dylan will benefit from the way the blog encourages me to scrutinise my own practice and to reflect on my relationship with him
- Dylan will benefit from the knowledge and skills I develop through my contact with autistic people and carers of autistic people through this blog
- Dylan will benefit from other people involved in his care having access to this blog and being able to build their knowledge of his life
- Dylan will benefit from being known, through this blog, as a real individual
- I will benefit from this process of review, which encourages me to reflect on my role as a carer and on my own life and needs as well as Dylan’s
- I will benefit from contact with others in a similar position to myself and with others who offer contact and affirmation
- Visitors to the blog (with and without autism and/or caring responsibilities) will benefit from the process of sharing and reflection
2. Non-Malfeasance (do no harm)
- I have identified some very personal topics which I will not write about in order to protect Dylan’s privacy
- I will not share material which I think could harm Dylan or make him vulnerable
- I will edit or remove any material which I feel is harming Dylan or myself
- I will put the protection of Dylan first and before anything else in keeping this blog
3. Informed Consent
This is a challenging issue for me ethically. Dylan does not have the verbal or intellectual capacity to give informed consent in the way which we would normally require. Here is the approach I take. I talk to Dylan about every post I am thinking of making and then in simple key word language I explain what I have written. I show Dylan the text before I post it and I give him a choice of visual images to select to accompany the post. After the post is made I scroll through it with Dylan and let him look around the site. If I felt Dylan was uncomfortable with something I would respect this and not post. However, I have to acknowledge that he cannot give consent to the verbal text and that I have given consent on his behalf for this.
Again, this is challenging within the context of individual stories and life histories. It is not possible to make myself anonymous due to my professional identity and profile as a writer. It does not feel plausible or possible for me to give my son a pseudonym or a contraction (such as ‘D’) as my son’s name already appears in other texts (for example in my poetry). I have, however, anonymised some details through omission or re-naming and I have protected the identity of other members of my family and our friends. I have anonymised ‘walk-on’ parts in these narratives by identifying people by their roles only.
B. Ethical Issues for You
In visiting this blog please respect the fact that I have shared these personal details about my son’s life. Please also respect any information shared about other people by visitors to this site. I will moderate comments with the same ethical standards that I apply to my own blog posts. I will not approve any comments which I judge to be offensive to groups or individuals, or which I think are intentionally inflammatory or designed to hurt people. When commenting on posts please bear in mind that people viewing this site may be autistic themselves or care for someone who is autistic, and that they could be located anywhere in the world. Please celebrate and respect these cultural and neurological differences.
Visitors to this site are very welcome to take and adapt any of the ideas or approaches described in my blog posts; one of my purposes in setting up the blog is to share and disseminate knowledge, information and ideas so I would be very happy if people found something on the site which they wanted to build into their own practice. However, please note that the writing on this blog is my original work and any use of my writing (poetry or prose) should be acknowledged. I am usually generous with my permissions so please ask rather than simply using something. The poems on this site have all been published previously and can be reproduced with appropriate acknowledgement of my books (see ‘Poems’ page on this site for details). The blog posts can be quoted from if you wish, but please acknowledge the source. Thank you.
Most of the images used on this blog are from my personal collection and were taken by me or by my children. Other images are sourced from the internet and to the best of my knowledge are copyright free. I have attempted to use sources responsibly and ethically at all times. Where the source of an image is unclear or unknown I have acknowledged this and noted my appreciation. Any errors will be corrected promptly.
The statement on this page is likely to be revised and to develop in order to reflect the dynamic nature of ethical practice described here so please check back from time to time.
This statement was first posted on 1st September 2013
Updated w/b 18th October 2013
Updated 1st November 2013
Updated 21st December 2013
Reviewed 15th April 2014
Updated 4th June 2014
Reviewed August 2014
Updated 19th March 2015