Kabie Brook shares experiences and insights with EUCAP from ARGH’s 20 years of advocacy by and for autistic people
Interview by Els Van Beneden
Hello Kabie. Could you briefly explain what ARGH stands for?
Yes, we are the ARGH Scotland, a collective advocacy, lobbying and campaigning group based in the Highlands of Scotland. Although our base is in the Highlands, we are nowadays active throughout Scotland.
Has ARGH existed for a long time?
About 20 years now. We first came together in 2005 as part of a project funded by the Scottish Government, aimed at addressing the rising number of diagnoses and the impact on care provision for autistic adults in our region. In 2007, we officially became a constituted group.
What does the structure of the association look like? Do you have members?
We have a six-person board of which I am the chair. In addition, there are about 150 members. These are all adults living in Scotland with a diagnosis of autism or who identify as Autistic. At the moment, all our members are over 18. The age of adulthood in Scotland has changed to 16, we are now changing to allow membership from age 16. So, we exist by and for autistic people.
Every year we hold a General Meeting where appointments or dismissals of board members are voted on. It is the members who form the board. We are an unincorporated constituted group now, but that will change. We are going to adopt the form of a SCIO (Scottish Charitable Incorporated Organisation). Our constitution has been rewritten for this.
What is the difference between the two organisational types?
As a constituted group we have no formal legal identity, although we have always met the criteria for one: keeping accounts, having an AGM etc.
A SCIO is a special, unique legal form for charities in Scotland, combining a charitable organisation with a legal personality and limited liability. This means a SCIO can act as an independent legal entity: it can enter into contracts, employ staff, own property, etc. It also protects board members from personal liability. It offers us several advantages without having to structure ourselves as a business.
Do you have any paid staff?
No. Neither board members nor members are paid for work they do for the organisation.
When we receive funding for projects that allow employment, we look for suitably qualified people, preferably from our members, and that person is of course paid for the project work. However, for people receiving Universal Credit, it is not straightforward to be paid without risking losing their benefits.
What is Universal Credit?
Universal Credit in Scotland (and UK-wide) is a monthly payment designed to help people with their living costs, including housing. It replaces six previous benefits (like Housing Benefit, Jobseeker’s Allowance, and Child Tax Credit) with a single payment. The amount depends on your income, household status and circumstances, such as having children or a disability. To be eligible, you generally must be on a low income or out of work.
Shall we talk about your activities?
That’s fine. Our raison d’être is lobbying, campaigning and collective advocacy. Everything we do stems from this. For example, in recent years we organised or were actively involved in Autistic Pride Day and Autism Acceptance Day. We also have good cooperation with many organisations and with the Scottish Government.
The government?
We have worked with the Scottish Government for 14 years in advisory groups. For example, we are involved in drafting the Learning Disability, Autism and Neurodivergence Bill. At first, we were the only organisation involved, but thankfully now more organisations participate, including four Autistic Peoples Organisations. It remains challenging to have our voices heard there. But overall, we see this ongoing collaboration with the government as positive.
Collaboration is something that often comes up with you.
That’s right. Another example of successful cooperation is the “Assessment and Diagnosis Report” we produced with other organisations. These were autistic-led organisations including AMASE and SEMA (Scottish Ethnic Minority Autistics) and also Scottish Autism, a more traditional parent organisation.
We have presented this report to the responsible Scottish Minister and met with him once to discuss it with another meeting with him to happen soon. It highlights a major problem in Scotland.
Could you tell us more about that?
Diagnosis times are getting longer and longer. At present, waiting lists in Scotland run up to 7-10 years, both for children and adults. Previously, diagnosing children was easier. Many doctors now advise their patients to seek diagnosis privately, which puts some people in difficulty. Some have to take out loans to get diagnosed. Sometimes local authorities don’t even recognise diagnoses from private practices.
Previously, you could simply register for the official “assessment pathway”; now you need a referral, which can be refused, sometimes unjustly.
If you get through that very long waiting list, you end up with a specialised team. Unfortunately, I must state that in the Highland region, there is currently only one practitioner working part-time for diagnosis. No wonder the waiting lists are so long.
It’s true there are more people seeking diagnosis – for obvious reasons – but that increase did not happen overnight. This is one reason why we wrote the report. But not the only one.
There is also a huge lack of post-diagnosis support. We are now the only autistic-led organisation providing this service. Demand is much higher than supply.
What does that course look like?
Our post-diagnosis course for adults runs over 8 weeks, a few hours per week. We also offer a course for parents of autistic children. We would like to expand both courses, but we lack people and resources.
How do you obtain resources?
When we started the courses, we received funding from the Scottish Government for three years. But at some point, it was decided that only incorporated organisations could receive funding for such projects. This is partly why we are switching to a SCIO (see above). Currently, we finance the courses from our reserves. We want to keep them as free as possible for autistic people. If we run out of funds, we will have to charge or stop.
And do you ask for contributions from your members?
No, membership is free. We also received some income from consultancy on media projects, but apart from that, no other income. We are truly drawing on reserves at the moment. Donations help too: currently someone is even running a sponsored event in aid of our organisation.
Will much change when you become a SCIO?
We expect so. We will probably become eligible again for funding our courses. We will also change our name from ARG Highland to ARGH Scotland. Although we have been active across Scotland for some time, the name change might attract more interest.
Are there other activities you’d like to mention?
Our seminars and workshops which we hold online. We recently had a workshop on “how to write an access rider.” We also run creative workshops, such as a “colours workshop”. We provide variety.
We also have in-person meetups, but not many, as members live far apart in the region. The distances are challenging and attending a meetup of a few hours requires considerable effort. Finding volunteers, or even paid staff, to organise physical activities is difficult. Most people simply don’t have the extra energy alongside family, work, etc. We always try to appoint two people responsible for a meetup group because we learnt that often one can drop out, but this is hard to explain to funders.
We would love to organise more meal groups and especially café groups if we had the people to run them. We hope to restart some café groups in a few months.
Is there something you are proud of?
Many things the organisation has achieved, but especially the fact that the Scottish Government raises the Autistic Pride flag every year. We encouraged them to do that and bought the flag for them!
May I ask some questions related to EUCAP? I would like to know what membership of EUCAP means for the organisation.
As I said, collaboration with other organisations is important for us, also on a European level within EUCAP. It means expanding our collaborations because it gives us the chance to work with others across Europe, for example in EUCAP projects. And not only in Europe, because EUCAP also works beyond Europe. This way, we learn what happens elsewhere and can collaborate and learn from each other. There are many similar challenges. So being part of a larger organisation like EUCAP gives members more power and strengthens the community aspect. Together, we are always stronger.
And if you may dream about the future of EUCAP?
I hope EUCAP soon receives more and much greater funding. Then people can be employed by EUCAP; there is much work ready for them. I think especially of the support function EUCAP could offer to its members; advice, to existing and new organisations, and setting up an information hub where we could learn from each other and where connections and collaborations can develop.
Also, I think more could be done for EUCAP’s visibility, both internationally and within the individual countries. You know, sometimes people wonder how autistic people can organise internationally. So, more publicity opportunities so every autistic person in Europe knows about it and could participate.
Another issue is the language barrier. From my perspective, since everything happens in my mother tongue, English, that may sound odd. But still, it would be comfortable for everyone to speak and listen in their own language. Wouldn’t that be a dream? Will technology eventually remove this barrier? Certainly, resources would be needed for that as well.
Thank you, Kabie, for this interview.
