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AutismBC Connects

Symbia Barnaby, Indigenous Storyteller and Neurodivergent Mother

September 27th, 2023

AutismBC

For Service Providers, Parents

“An Elder helped me to look at my child in a completely different way. It was so liberating because of the Western view I come from in my medical background. It helped me to understand the distinction between a medical model and then a holistic wellness model and it started to unravel some of my ideas about disability”

Symbia Barnaby is an Indigenous woman of Haida and Mi’kmaq descent. She currently lives on the traditional unceded territory of the Coast Ts’msyen People, specifically the Nine Allied Tribes of Lax Kw’alaams. Her traditional Haida name is Guu Gaa Jung and her spirit name is Warrior Woman. She is a single mother of 6 children (5 of which have disabilities). She is trained as a Practical Nurse, a Birth/Postpartum Doula, and a Reiki Level 3 Practitioner. She is also a storyteller, a filmmaker, and a Wisdom Translator. Symbia volunteers with several community-based organizations aimed at supporting the growth and healing of generational and systemic trauma. She has developed and runs workshops on decolonization, anti-racism, equity, inclusion, and disability. She also does consultation projects with various agencies and individuals wanting to understand equity, policy, and protocols through an Indigenous lens with her business called Healing Nation Consulting. 

Website: https://www.healingnation.ca/

Email: [email protected] 

FB: Symbia Barnaby 

IG: @symbiabarnaby

 

What are the Indigenous perspectives on disability? 

I want to preface everything that I’m saying right now is speaking from my experience and the things that I am connected to. I do not speak for the Indigenous Collective, and I would like to make sure that I have that distinction. 

I was born and raised in Western Canada and connected to a lot of different communities in between and I have yet to come and meet Indigenous peoples who say that they have a word in their language for disability. It does not mean disability does not exist. What I’m saying is the teachings we’ve received from Elders taught me that our concept of disability is around gifts. There are gifts that everyone has to offer their community, and we talk about it in our circle teachings and understand within our circle that no one is above or is below; we are side-by-side. When people share their perspectives, they’re invited to the table to share regardless of their age, sex, ability, political or community standing, so all those things tie together. When we’re looking at what disability means, it is people having gifts and being able to come forward to share those gifts within the community.  

An Elder helped me to look at my child in a completely different way. It was so liberating because of the Western view I come from in my medical background. It helped me to understand the distinction between a medical model and a holistic wellness model and it started to unravel some of my ideas about disability, my concepts and understanding of how to approach people, and what could help us move forward in a good way. 

Why do you feel that autism is underrepresented in the Indigenous community? 

There are a lot of different pieces that come to mind when I think about the ‘why’ around autism being underrepresented in Indigenous communities, and I talked a little bit about the Indigenous belief systems versus Western values and how those are not always congruent. If you’re looking at people as gifted, do you think that you’re going to pursue an Autism diagnosis? Probably not.  

Your approach to holding space or accommodating these people will look different when you’re coming from a medical mindset versus a cultural/spiritual mindset. That is one thing: the difference in value systems and the difference in perspectives towards disability. The other piece that I will say with some confidence is that not everybody understands when we’re talking about academia how to approach Indigenous peoples and do research with Indigenous people, especially on subjects like disability and autism. I have witnessed, in various spaces, research teams that do not have Indigenous perspectives whatsoever and have not had space for people to share their perspectives on disability and understand how to move forward in a good way. This can create a huge barrier when it comes to looking at their actual representation.   

The research part of it is, could we accurately say how many Indigenous people have autism? Or, say, cerebral palsy, FASD? We cannot because there are not enough people doing this research right now. Some of that is because of funding but the key piece is the approach behind the research methodology and if those things do not come together in a culturally safe way, it will not go anywhere. The last piece I would like to mention of this culturally safe component is the ‘why’ around the coaching and consulting work that I do and a big part of the message that I try to drive home. 

 Historically, with Indigenous lived experiences with residential schools, the 1960s scoop, the Millennial scoop, and all those eras and policies of child apprehension, there is a long-standing history of governments, churches, and institutional policies that removed Indigenous children from their families and communities.  

So, when we are speaking of disability funding and supports that are connected to the Ministry of Children and Family Development Services and the Health Care Systems, having to go through an autism assessment and diagnosis is a challenge as both of those systems have not been done right by the Indigenous people. If you put the entryway into the disability world through the healthcare and social-welfare and -services systems, you can understand that there will be a lot of people who will not come forward. 

I have had parents come forward who have lived experiences, like my family, and don’t always see a value in getting a diagnosis for their children because of the concern that the payoffs for support around living in a northern or rural remote community [don’t outweigh] the risk that they are taking by coming forward and the assumed risk of being misinterpreted and their children being taken away. 

I think that those are huge barriers and why there is an underrepresentation of Indigenous people in the autism community. 

What do culturally safe support systems look like? 
Photo credit: Healing Nation

Cultural humility and capacity are the two key things that need to be in place.   

For example, cultural humility means an understanding that just because this is your bias or value systems, it does not mean that those values will always mesh with Indigenous value systems. 

What we have seen in the past is that Western values supersede the Indigenous value systems immediately, and there are assumptions being made and interpretations. Cultural humility is understanding that our value systems might be completely different, and you need to understand how to check your bias. 

Coming into Indigenous spaces, it’s important to learn, observe, and witness so you do not cancel out Indigenous value systems and approaches. When we are looking for support services that are culturally safe and responsive to our family and with consideration for our vulnerabilities like family violence and poverty must be understood as risk factors in these spaces. 

The other approach is around cultural sensitivity or cultural safety. That’s a huge one; knowing when you go into a space, do Indigenous people feel safe to be in those spaces? That comes from language, it comes from building trust, it comes from other Indigenous spaces. It’s not just having Indigenous art up and saying, ‘Oh it’s a safe space now.’ It’s the cultural capacity of being able to carry out meaningful conversations and meaningful interactions with Indigenous people, as we are not looking for lip service. 

I have been on a variety of different research projects and there is this one research project where I brought forward some of my concerns. They are they are an amazing group of people and then I have also been in some spaces where people have dismissed my concerns. I have been able to amplify my voice and change the project research, and align and format questions with an Indigenous perspective and I have been able to articulate why these things are important. They were very responsive and that’s a huge piece of having cultural capacity that also ties in with cultural safety. It brings forward decolonization and indigenization into these spaces, which benefits all and is everyone’s responsibility for reconciliation. 

What do trauma-informed Indigenous neuro-affirmative practices look like? 

I cannot stress enough how much, as a neurodivergent person and as a parent who is raising neurodivergent kids, I need time to process and for someone to sit with me. Sometimes, it is to do paperwork, they don’t need to do the work for me, it is simply that they’re sitting with me keeping me on task and giving me space to process, understand, or interpret the information. Having someone present who supports those needs is a key piece of trauma-informed practices. 

Another part is understanding that relationship-building needs to happen. You cannot sit alongside us without the relationship which creates trust. That has to be there, or we will not want anything to do with you. It’s part of how we’re wired as neurodivergent people and that sometimes we struggle with making relationships and trusting people in the first place, so that’s the first core step that needs to be there.  

As an example, you go to the doctor’s office, and you get your 10 minutes. Without bringing in an Indigenous perspective or value system into the relationship, it makes it challenging to be open. We need to decolonize those spaces and there needs to be more time to build relationships and trust.  When we are speaking of our traumatic experiences, giving me 10 minutes to come in and talk about what’s happened that’s not a responsive approach in any way.  

Some parents who are neurodivergent themselves are raising kids who are neurodivergent and who are not yet assessed, diagnosed, or who have flown under the radar. They understand that they want to do something differently for their child, but how can they get that without approaching them and saying how do we support you as a family unit? That’s the key factor to consider with Indigenous clients and having trauma-informed and neuro-affirmative spaces: understanding that they are a unit and together.  

Historically, not having trauma-informed or neuro-affirmative understanding has gotten in the way of relationships, and learning needs to be focused on building off the strength of the families and aligning with them to create safe spaces. 

Trauma-informed neurodivergent safe space is looking at people holistically and understanding that poverty, family, and colonial violence are things that we must understand and must be included in our advocacy for that person or alongside that person. 

What values should they be looking for and what therapies align with the Indigenous perspective on disability? 

Coming into Indigenous spaces, it’s important to learn, observe, and witness so you do not cancel out Indigenous value systems and approaches. When we are looking for support services that are culturally safe and responsive to our family, our vulnerabilities, like family violence and poverty, must be understood as risk factors in these spaces. Understanding that our value systems might be completely different from one another and understanding how to check our biases coming in. When non-Indigenous people come into Indigenous spaces, you are there to learn and to observe and to bear witness and not to always bring your value systems in and cancel out Indigenous value systems and approaches. It’s understanding the historical relationships of Indigenous people with the healthcare, social welfare, and justice systems through reports like the Missing and Murdered Indigenous Women and the TRC report. It’s about having an understanding of the over-representation of Indigenous children in the child welfare system. How do those historical pieces impact responses that are coming out of Indigenous communities right now? How does that impact how individuals or families respond to treatment options from occupational therapists, physical therapists, and speech-language pathologists? Being able to put all those things together is what lets us carry out meaningful conversations and meaningful interactions. 

What are the challenges faced by those living with the intersection of indigeneity and autism? 
Photo Credit: CBC

When we’re talking about moving forward and reducing challenges, we need to look at reducing barriers to get help and support. Low barriers mean that we don’t always have to wait on a diagnosis to be able to get support because there is stigma around it for Indigenous people and there are barriers to getting a diagnosis with the wait times and having to leave your community. 

For diagnosis, you have to go to Prince George or Vancouver. That’s a long trek, and to go with my daughter to get her autism diagnosis, we had to drive to Prince George and back. I had to leave my other children behind and I’m a single mom with six kids. I don’t have support to pay for child care, so I had to come out of pocket to make sure that my kids were taken care of while I was away. It’s a stressful time when you need the most support and you’re trying to be there for your child. It’s a lot to listen to when somebody’s telling you about intellectual disability or about autism. It’s a lot to experience and it’s a lot of things to get prepared for your child to go through this process and to advocate for them. It took us three years to get that diagnosis from beginning to end. That becomes another barrier because there are three years of her being unsupported at school because the system is saying she needs a diagnosis in order to get those supports. In the meantime, she was excluded from school multiple times when they said, ‘You need to come and pick her up; she can’t be here; she’s having a meltdown; she’s experiencing this.’ They couldn’t figure out how to support her properly at school, so her behaviours were reactive to the conditions that were there at the school.  

Who should families seek out when looking for guidance? 

When families are looking to find those supports and safe spaces in the community, I always tell them to check in with their local Friendship Centre. If they are urban Indigenous people, that’s where I say to go first, as they may have programs that have some knowledge base on it or can refer them to other people. Many Friendship Centres do have Aboriginal support of Child Development (ASCD) and Aboriginal Infant Development Program (AIDP) that typically hold those contracts, so they have kind of a pulse on those early childhood development programs and understand the systems some of them take a good interest in this and some of them are in it because they have family members that are in that kind of community that need support. 

If you’re on reserve, is there a health center? Are they knowledgeable about support services for Indigenous people? Then, provincially, we have AutismBC, who is awesome about being able to help do some resource management for people. You’re able to have support through them and they’re more structurally able to help people find support provincially and to get a better understanding of what kind of supports there are in community. The last one I’ll say is Jordan’s Principle. They’ve done an amazing job of trying to expand their services. Before, there were a lot of hoops to go through. It wasn’t always user-friendly a handful of years back. They’ve done an amazing job making sure that that they’ve expanded that program and those services for people, so if there are gaps or barriers that you’re not able to get support or you’re not formally diagnosed yet, that is an avenue as long as you’re Indigenous. The Metis Society is similar and has program and funding options for families. (Learn more: Wellbeing program – Métis Nation British Columbia (mnbc.ca))

A major barrier for people who live in remote communities is that we don’t have access to any services because we don’t have the option in our community. If nobody’s keeping the provincial and First Nations governments accountable for having service provision in Northern remote communities, what ends up happening is that our kids go unserved. I’ve had multiple people who shared with me that they’ve never tapped into their children’s funding, not because they didn’t want to, but because there are no service providers in the area and they didn’t have the connections to travel to major centers like Vancouver. 

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