Accessibility is about more than just ramps and grab-rails. Based on research with deaf and disabled people, a new blog on https://shapingourlives.org.uk/ uncovers some of the key access and support needs that people need to live truly accessible lives:
When the topic of accessibility is raised, many people automatically think of ramps, lifts, and grab rails. While those physical adaptations are important, making activities inclusive requires more than step-free access.
If you want to make your activities truly accessible, then you need to be aware that there are a wide range of barriers and a wide variety of impairments that people may have, each experienced differently, and that not all impairments are visible or even obvious.
“An invisible disability is often not acknowledged.”
“Despite not being of a physical nature, my access needs are incredibly complicated.”
And it’s not easy to raise one’s access and support needs when organisers of involvement don’t provide a way to do that, or when you have multiple or complex impairment(s). Some impairments affect energy levels or neurological function, which makes it tougher to advocate for yourself and the support you require.
It can also be hard to remember everything, especially if you have an impairment which affects your memory, so participants might inadvertently miss out something important.
“It is difficult to remember them all when asked, it often ends up being an evolving process of the requirement being revealed as things go wrong.”
From our research we know that people don’t always ask for the small adaptations and access requirements they need to take part equally. Small things such as memory tools (e.g.name badges), information in an accessible format or meetings at certain times of the day can make the difference between good and poor involvement experiences.
Sometimes conditions fluctuate – it’s not always easy to know what support to ask for when it might depend on the day or might depend on the type of activity.
“I never know how well I’m going to be on the day”.
Our research into service user engagement shows that Disabled people are tired of repeating their access needs only to have them not met, perhaps because organisers don’t have enough time, budget, knowledge, or will.
“Even though I have told several organisations about my access requirements they still don’t implement these. I get fed up with telling people and it makes me feel as though I am asking for something unreasonable.”
“It would help organisers to plan ahead, sometimes they can ask for access requirements close to the date of the meeting and are unable to make adjustments because of the short notice.”
All of these factors make getting access and support needs met a barrier and a hurdle, and it shouldn’t be, not if those committed to public participation are also committed to genuine inclusivity, hearing from those who are marginalised, and willing to remove the barriers to participation so “seldom heard” becomes a thing of the past.
Based on what people told us in our research, our National user group of Disabled people and service users came up with the concept of a ‘My Involvement Profile’ (MIP) to support people to detail their lived experience and advocate for their inclusive involvement. There are help notes to accompany the profile too.
By sending it to all your participants, you could gather all their support and access needs in one simple format, designed by Disabled people, for Disabled people.
“A template would help with things I may not have thought about, or taken for granted.”
Using this template, developed by a user-led Disabled People’s Organisation, would also show those who lack confidence about asking for support that you value their requests and take the process seriously.
“I’m too scared to ask and for people to think I’m weird. I don’t think people take me seriously anyways.”
Participants could also use the Profile when they approach other organisations – reducing the time and energy required to repeat their needs, and reducing the risk of forgetting something and being excluded.
If you’d like to find out more about the My Involvement Profile, or about the work that we do around inclusive involvement, then please get in touch: firstname.lastname@example.org
We have over two decades of experience in service user involvement. Visit our website for free resources and research, or sign up to our newsletters for regular updates about inclusion, involvement and co-production: http://eepurl.com/gmQUu9
All the quotes in this article are directly from service users, provided anonymously.