Peer support and independent living

Alessandra Grotta 1 and Kamil Goungor 2

Alessandra Grotta and Kamil Goungor
Alessandra Grotta and Kamil Goungor

What is Peer Support and why is it important in the context of Independent Living

Peer support is one of the pillars of Independent Living and an essential element for the self-determination of disabled people.

Peer support can be described as the help and support that people with lived experience can give to other individuals in a similar situation. For example, it can refer to support provided by someone using personal assistance (PA) to another person using a PA. Or, to somebody who has lived in an institution in the past to other people still living in institutions. This support may be social, emotional or practical (or all of these), and can be life changing.

The development of peer support and peer advocacy began in the mental health field in the U.S., New Zealand and Australia, when people began to move from institutions into the community. The Independent Living Movement and disabled people’s organisations continue to view peer support as an essential element in the bridging between dependency and independent living. Peer support is based on the knowledge that disabled people are experts in recognising the barriers they face and the means in which those barriers can be tackled.

ENIL and Peer Support, what has been done so far

The European Network on Independent Living (ENIL), it is a Europe-wide network of disabled people, with members throughout Europe. ENIL has also an active Youth Network, which brings together over 300 young disabled people and focuses on issues of interest to them. ENIL’s mission is to advocate and lobby for Independent Living values, principles and practices, based on the social model and the UN CRPD: a barrier-free environment, personal assistance, deinstitutionalisation, inclusive education and other things.

Peer support has and continues to be fundamental to the philosophy and practice of independent living organisations in the empowerment of disabled people, because it is based on lived experience and facilitates a grassroots process. Having said that, ENIL has implemented a number of activities on peer support over the years, and so did many of our members, for example in using peer support in the transition from institutional care to community living.

As we can read on ENIL’s website (where you can find also additional resources), in 2012, ENIL organised a training on Peer Counseling in Tartu, Estonia. In 2014, we developed the “Peer Support for Independent Living, A Training Manual”, which came out of the Peer Support Training in Sofia, Bulgaria, organised by ENIL and CIL Sofia. One more such training followed in 2016. The same year, we also published the findings and recommendations from the Peer Support Survey. In 2020, in the middle of pandemic, the ENIL Youth Network organised a webinar on Peer Support in times of crisis. Finally, in 2022, we launched PAUC – a Personal Assistance Users’ Club (PAUC).

The experience of PAUC, what we learned

PAUC was launched by ENIL in 2022 as an online peer support group. Participants in this group meet approximately once a month. This group is open, which means that each meeting is independent of previous ones, and individuals can join without any pre-registration. The decision to have an open group, rather than a closed one, was made accordingly to the preferences expressed by participants in a survey conducted at the beginning of the project. Having an open group increases flexibility in participation and may also motivate people to explore the group and see if peer support is useful for them.

The group's discussion topics are proposed and selected by the participants themselves through an ongoing online survey. This survey is always accessible and allows participants to suggest new subjects and vote on proposed ones. The range of topics covered has been broad, spanning from individual issues, for example “which boundaries when living with a PA?”, to matters at an institutional level, for example “How to raise money for independent living”.

To date, individuals in eleven different countries (Portugal, Spain, France, Italy, Poland, Czechia, Greece, Hungary, Bulgaria, UK, and Sweden) have joined PAUC and contributed to this cross-country peer support network. Since the majority of participants come from South and Eastern Europe, it is possible to speculate that individuals using personal assistance in countries where such services are less available may feel an increased need to connect with peers and to gather information about available PA schemes. Peer support may thus play a crucial role in countries where PA is still under development.

Diversity in the group is present also in terms of ages, as well as in terms of experience as personal assistance users, including both newbies and senior users! The group aims at being as accessible as possible and participants can choose their mode of participation, whether through voice, chat, or having a personal assistant supporting their communication. Also, the group is usually rather small and this allows space for all the participants.

Peer support: a flexible tool for all

PAUC is just an example of how a peer support group can be structured. Various participants might require and prefer different formats. Peer support groups could encompass in-person meetings or being closed, depending on whether participants feel more comfortable sharing with a familiar and limited group of peers. Also, peer support groups might consist of individuals in similar life circumstances, such as being both parents and PA users, or individuals who identify with a specific gender. Intersectionality thus applies to peer support as well, and the availability of diverse groups may help everyone finding the best support for them. Hence, it would be crucial that centres for independent living encourage and support the establishment of peer support groups and continuously invest in the training of peer supporters.

The positive effects of peer support on outcomes, such as empowerment and coping, have been repeatedly showed in many different contexts. During a time when psychological health and well-being are known to be among the significant challenges for the upcoming decades, peer support can represent an invaluable tool that, together with other resources, can help disabled people advocating for their rights and strive towards independent living.

Alessandra Grotta, 38, is from Italy but has been living in Sweden since 2012, when she became a 24/7 personal assistant user. In the past decade, she has tallied over 40 personal assistants hailing from every corner of the five continents. Since 2022 she has been collaborating with ENIL on the PAUC project. She has a background in statistics and she is working as a researcher in the field of social epidemiology at the Department of Public Health Sciences of Stockholm University. Her current mission is to apply advanced statistical methods to document disability-related health inequalities using the invaluable data from the Swedish national registers.

Kamil Goungor, 35, is from Poland but is born and lives in Greece, where he studied journalism and communication. In 2014 he co-founded i-living, the first and only Independent Living organisation in Greece, which now he chairs. Since 2018 he works for the European Network on Independent Living - ENIL as Policy and Movement Support Officer. Also, until autumn of 2022 he represented the ENIL Youth Network at the Youth Committee of the European Disability Forum, being the chair of the latter, and he was also in the Youth Committee of the International Disability Alliance. Finally, Kamil is the only disabled travel blogger in Greece (check @thetrawheeler).


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