S2 Episode 14 - Power in Knowledge

At Blacks and Mamas, they do regular support group sessions, informative discussions and panel talks on all things Black mental health, Black motherhood and Black neurodivergence. Psychotherapist ledd workshops, nutrition and gut healing for better mental health courses. One to one psychotherapy and housing programmes, regular mummy meetups, mummy nights out, ymwneud â'r cymdeithasol a'r cymdeithasol a'r cymdeithasol a'r cymdeithasol a'r cymdeithasol a'r cymdeithasol a'r cymdeithasol

And we're going to be shouting out and focusing on a tidy mind on our social feeds and in our blog, in our community news, to tell you a little bit more about them and why they want to support the

You had nowhere to be truly vulnerable. So you created a space for others. And I want to explore Blacks and Mammoths with you and and where that came from and the work that you're doing and your vision for that later on in the interview. But today, this is a space for you, for us to focus on you and your late discovery. Because you'd put in your bio that you always tell your mammas, your Black Send mammamas, that the space you've created is a safe space.

And you say that if we're not being vulnerable, then we're not healing and that being able to bring vulnerability out of people in a comfortable way really is a gift. Yeah. So I want to hold this space for you today, Marcia, and let us explore your late discovered story. Let's start with that, your late discovered story and what made you start exploring your autistic self.

Rydyn ni'n gwneud hynny. Rydyn ni'n gwneud hynny. Rydyn ni'n gwneud hynny. Rydyn ni'n gwneud hynny. Rydyn ni'n gwneud hynny. Rydyn ni'n gwneud hynny. I was aware that I could be projecting and just diagnosing people. You know, when you have those kind of degrees and you go on to diagnose everyone with everything. Um, but I kept an eye on it. As she got older, it became quite obvious that it's quite likely that she would get a diagnosis of autism. So my initial inclination was to write about it.

I used to do blogs um and that's how I best express myself through written work. I'm not so great with the words, but writing I'm really good. Uh um and that was immediately poo-pooed by my family, um, by my husband. That was a complete no. Um, I wasn't to share it on social media or anything like that. So for whatever sociocultural factors, um, coming from a Caribbean background, my husband is of Asian heritage, he had Indian parents.

Um, this particular topic within our communities is often approached with a lot of fear and shame. It's almost taboo. Right. Um so we we tend to we tend to talk around it rather than talk about it. It's not something you talk about at the dinner table or talk. you know, and then there's this uh reluctance to accept autism or any kind of developmental disability, anything to be honest. Um so

um how I should be feeling or reacting, you know, basically masking, right? Um and so I followed suit. I did what was expected of me. I didn't really talk about it. She was my first child, first experience of autism. It was only as I took on the role of a researcher, as you do once you get a diagnosis, you kind of want to know more about it for the sake of your child and and what you should be doing as a parent to kind of support her development.

As I took on that researcher role, I began my journey of, you know, finding out about it, trying to get out of this depressed state that I was in, because I didn't have a support network or anyone that kind of understood. Um and I I started to learn more and I immersed myself in the world of um neurodivergence, autism specifically. I had my fill of anecdotal stories and and I started to feel really at home. You know, I I began to identify traits from childhood.

traits that exist now. And you know, at some point, luckily I recognize that there is power in knowledge. I am still learning about me, who I am without a mask. Um, but I have been successful in kind of separating and altering that original, you know, narrative of shame that began with my daughter. Um, and autism is something completely different for me, you know. It's something that I've now managed to make into a tool of empowerment. Um, when I had my first child, it wasn't so great.

indirectly improved on me, the people around me. It wasn't deliberate. That wasn't my mother's intention, but that was just how I interpreted and internalized their reactions to autism. But I'm on a much better path now, have a completely different view of autism. Um I'm very much

always trying to advocate for the mums in my group to go and get their diagnosis because as as I've said to you before, a lot of them have started to recognize their own potential neurodivergence through their children's diagnosis. Um so so yeah, that was my first introduction to autism.

We always did in some way. Um, we always rejected those social norms. Um, and I was seen as a difficult person at times. But now I'm recognising the importance of standing firm in that, you know, for my sake, but also for my girls sake. I have three little girls who are diverting and autism, ADHD. You know, I'm really big on teaching them that we have to carve out a space in the world for us.

rather than waiting for acceptance or accommodations. I mean that is we sh we are due that, but it's it can be difficult if you're expecting it, you know? Um as far as self disclosure for me. I think it depends on the company. Um and I'm always allowing myself to not feel guilty about being selective with who I discuss it with. I felt a lot of rejection and and negativity, particularly from friends and family.

um about disclosure in the past. And so I think it caused some degree of trauma. I'm not keen to endure that again. It's funny because I shouldn't have to feel like I need to be armored to tell the people that I love. And and those that are closer to me, these things, you know, what I struggled with, my experience. um and that they've always struggled with to be fair. Um, I tend to see like a particularly visceral reaction to the idea that I'm autistic, um, from friends and family.

And I it's because they're unable to perceive my lived experience. Um, unfortunately, I'm unable to show them. I can only offer insight, you know, into what masking is and hopefulest because that's why they couldn't really see my experience because I you know I've masked a lot.

Um, but you know, feeling rejected or or gas slipped when I allow myself to be vulnerable enough to be open about it uh to the people that I've known for a long time, that has an effect, you know. Um It's it's difficult for them because they haven't necessarily perceived it. Um, but like I said, I am a master of deception as far as you know, my entire life has honed

and prepared me for masking. Right. That's that's just what I do, you know. I I was saying if I were to really explain autism, you know, to the people that I I'm closest to, would know what they're trying to perceive, you know, how much aside from the stereotypes that they have in their head.

how much do they know about the way in which it presents, right? It'd be difficult for them to really perceive anything because I don't think anyone goes out of their way to kind of do that research. So I'm not sure what they're doing, to be fair.

You know, they have these these stereotypes, don't they? These this narrative. On this self-discovery, you're talking about uh the I mean you've not used the term loneliness, but it it sounds what you're describing is uh was a really lonely place to be um as a as a parent with your autistic daughter, uh as a late discovered uh autistic woman who's on this journey herself. So you

You then created this community. So tell tell us a little bit about Black Send Mammoths then. Where where where did that come from? Where did it come from? What was the The kind of driver to setting that up, Marcia.

Um, and so in that time I kind of was at a loss because the mummy groups that I had um attended, there were a couple for Sen family, Sen mums, and they were in Outer Essex where I had just moved to, and it is predominantly white people, so non-black. I would attend these groups and they were very um explicitly

So I stopped going to these groups and then when I got the diagnosis and I was informed by the pediatrician there's nothing left for you. You've done everything until, you know, for another for a whole year, you won't really have any support for Zara. I kind of um that was a real low point because I recognized I didn't have any kind of support network.

um, no one that kind of knew what I would go through on a day to day basis basis by way of relating to what I'm going through. Others other mums of children uh with neurodivergence. And so Um, there was there was a time that I was quite low because I was isolated. I kind of cut off contact with my friends because they didn't really know what I was going through and I I just felt like I can't talk to them about the things that I go through.

Um, and I had no one. And so I recognized that I need to create a safe space. Eventually, when I got out of, you know, depression mode, I need to create a safe space for mums like me. whereby something like racism wouldn't even be a a thought it wouldn't be a factor at all. Um and mums would know that this is a place that you could come to to express yourself. I don't practice any exclusion. Everyone's welcome.

But I just need those whose voices are heard the least and statistically who access the least amount of support. I need them to know that this is the space for them. This is where they can come. Um we uh support them in sourcing adequate mental health support. We also run um uh psychotherapy uh one to one sessions as well for the mums.

Um and yeah, so it's a support it's a support group and a charity for mums with children with neurodivergence, ADHD, dyspraxia, autism, dyslexia, so on and so forth, Down syndrome, et cetera. Um Rydyn ni'n gweithio'n gweithio'n gweithio'n gweithio'n gweithio'n gweithio'n gweithio'n gweithio'n gweithio'n gweithio'n gweithio'n gweithio'n gweithio'n gweithio'n gweithio'n gweithio'n gweithio'n gweithio'n gweithio'n gweithio'n gweithio'n gweithio'n gweithio.

in my team of specialists. They are also all mums with children who have special educational needs. um which is what the schools refer to it as. I say neurodivergence, but it's called black send mummers because I need for the mums to understand what we're about. And a lot of the mums in my community are unaware of the term neurodivergence. um or neurodiversity. And so I'm using the term send or send special educational needs because I know that they hear it in

school. And so when they see that black sin mamas, they know that this is the place for them. When I hold my talks, when we do our panels, so on and so forth, it's very educational. There's a lot of information exchange and I do talk to them about terminology and why we use neurodivergent. or or neurodiverse um rather than send um you know in general life. So sorry, my daughter's school. Um so we have a lot of mummy nights at a lot of mummy branches.

And things to just get them back to feeling like themselves, um, as an individual, not just a parent. And you know, I I I mentioned before a lot of the mums are starting to recognize that they may be autistic or ADHD may be at play or something to that effect. And I'm really big on encouraging them to look into it, you know, just to lean into it because

A lot of things in our lives as as black women we don't necessarily get the support for. Um, I need us to be recognizing when we need help and then understanding how to access that help. Um, because ultimately if you're not okay um within yourself, you're not going to be

supportive enough for your child who may need extra support um given the diagnosis. So I just think it It's a community of women that are trying to heal and trying to inform themselves about the support they may need outside of our community.

And then mental health disorders, right? Um, they're often appearing at the same time. And I would really put it down to the fact that this world isn't so accommodating of those with neurodivergence. And then we have things like implicit bias in place. So I have to be really careful about the way in which I carry myself in the office or the way in which I do things because it it will often get put down to

labeling me negative things rather than the consideration that there may be some neurodivergence underlying my behaviors, right? Um and so as a black woman, because I am aware of this stereotype in the Western world particularly.

I have to mask almost twofold, if that makes sense. And a lot of the mums have to do the same. It gets tricky when you're not aware of your own neurodivergence. And so, um you're not going to look for any kind of support or help as far as getting a diagnosis, which is why I'm trying to bring awareness.

of things like autism and ADHD and late discovery to the mums. You know, it is a thing and it your life may have been difficult for a particular reason that you can now access some support for. Um but most certainly There is definitely it's the the labels that are put on us

can really hinder our development in various aspects of our lives. But then also the sociocultural aspect, the ignorance within the black community Black community towards things like neurodivergence and mental health means that we're less likely statistically, as in it's empirically evident. to seek the appropriate intervention that we need. And then in the times that we do seek the intervention that we need, black health uh sorry, healthcare, um uh healthcare for black women

um is not necessarily the greatest. We're often not believed, gaslit or the the care that we receive is subpar. So there are various factors that kind of interplay that. serve as barriers between us getting the support that we need as far as our mental health and as far as diagnoses.

we would recognise here in the UK. And I just wonder then, within Blacks and Mamas, you must be working with a huge community culturally. And the differences that you see and the different starting points, uh, sounds like a a huge educational piece that you're doing within your community, as well as providing all of that support.

um for their children and for themselves. Um but one thing we have recognized is the importance of um acknowledging and honoring the differences between us. Um, so in the in the Black Send Mama specialist team, we have mums who are from all different cultural backgrounds. And I did that. deliberately to kind of reflect the mums that we're helping. So we have Somali black send mamas in the specialist team, Nigerian, Ghanaian, West African, East African, South American, Caribbean.

Um, because culturally we are so varied. Yes, there are many things that we share. um common experiences with, but also it's those little nuances. There's a lot that goes on in the Somali community that I don't know about. And so I felt it was important to have a some Somali representative. We call them Mamarep.

to go and speak to the Somali mamas who have sent children or neurodivergent children in that community so that they can find someone to relate to. Um I think a lot of things are lost in translation, uh, as far as getting support from, you know, send or local local authorities send initiatives.

um because we don't necessarily relate to the people that are helping us and so Acknowledging that there is a cultural difference and that does impact someone's experience of send has been really ample for finding a success. in the amount of women that want to come on board and join Black Send Mummers. There's over a thousand mums and we all have different backgrounds and I'm really happy to say that we've got a lot, a lot of that covered and reflected in the staff that we we use here.

So when there is, you know, something that I want to relate to certain communities um that are, you know, different culturally, I would probably more likely send out the mums that kind of are from that community just makes it feel a lot more personable and a lot more like we genuinely care that we are helping you and it's not just a tick box exercise.

But I want to hear more about about your experience. So uh what would you say some of the struggles are that you that you experience that perhaps others don't see because clearly you're you're you know, you are the you've created this community, you're the you know, you're you're you're the head of this community, you have built this from scratch. Um

But you must struggle with things. There must be things that people perhaps don't see behind the scenes of some of the things that you struggle with on a on a day to day basis.

I just spoke to one of our Sen mums who kind of sent me a message and she said, You know, I'm just going through a lot and she laughed off and she said something to the effect of silent struggles. Ha ha ha. And I just messaged her back and I said, You know, I'm going on a podcast right now, but I would just like to say we don't do silent struggles over here.

We do a problem shared is a problem halved. And I really want us to be that base where people can tell us what's going on. For that reason, I do talk to the mums about the things that I struggle with. um particularly as someone um who has a brain that doesn't work like uh the the the majority of people the people in the world have an atypical brain and so the brain function um can sometimes be in hindrance.

Um I have a complete lack of what feels like executive function, organization skills completely out the window. Um, my memory is just non-existent. So Running an organization, as you can imagine. with all those things at play is extremely stressful at times. Then burnout is something that a lot of autistic people and ADHD neurodivergent people in general. That's something that we um struggle with a lot. And I do feel that often

I also feel the weight of the pressure to maintain what I'm doing because the when I first started, there was a week in which about three women came to me, um, trigger warning. They did say they no longer wanted to be here. Rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n gwybod

We were running the psychotherapy programs. I couldn't just stop. This is something that these mums are dependent on because there isn't support like this in this capacity for our community, right? And so I know that I have to do this regardless. And that definitely adds to the pressure and it definitely adds to the burnout. Um, but like I said, the community of

women that I I work with and for, they are amazingly understanding, empathetic and forgiving. And um they don't expect anything of me other than to basically do what I can. And and what I can't do is fine and they're accepting of that. And so I'm able to be very honest about that. But there are definitely things that I do struggle with um as far as being an autistic woman. Um

Um so this is fairly new for me and I don't I don't know. My the way that I describe my thinking and my and my brain is is all over the place. I say it all the time, my brain's all over the place. So by the time the burnout kicks in, I don't I I'm not recognizing it because I'm dealing with so many other things.

And so I it happens when I'm bang in the middle of burnout and then I'm like, everything feels like a struggle. Oh, I know what this is. Okay. Drop everything. And I I have become So um I'm really strict about just whatever demands I can offload, whatever demands I can let go of in that moment I'm feeling burnout, I do because

Initially, when I first as an adult used to experience burnout as a mother, I didn't know what it was and it had me almost bedbound for days. Um, and I couldn't mother properly, I couldn't function as a member of society. And I would come up with a lot of um coping mechanisms to to try and make sure that um it doesn't happen. And those didn't always work. As far as recognizing it. But I know now when I'm in the middle of it.

stop everything because it's only gonna get worse because I know what it is from when I first used to experience it and I had no clue what it was. I know exactly where it's going and I don't have time to be bedbound for day for days. I don't

I just kept being labeled the lazy child. Um, and that was due to burnout. Um, that was due to me not wanting not being able to just do extra or being easily demotivated um for certain tasks. And so I that translates now as an adult into me not wanting to drop anything. Black Sin Mamas is somewhat in its infancy, so I don't believe that I've developed it enough to just let go of the reins like that completely.

So as far as dealing with burnout, I kind of just have to lessen my load until I feel a l I feel less burnt out, if that makes sense. The feeling of of overwhelm and exhaustion doesn't necessarily go away. Sometimes it's lighter. Um, and that's not the best way to deal with things. And I wouldn't encourage encourage that of my mother's either. Um I've been really lucky recently um to have been offered support from a an organisation, Blooming Genius. Um they recognise the work that I do.

Can take a toll, and they've offered to pay for my therapy sessions. And I have an amazing new therapist. Um Uh she just I I started crying within the first half an hour of our first session. And she said, you know what, let's not work on putting things in place right now as far as coping mechanisms and and so she said, Let's just Have this as a space where you can just let go.

Oh and let everything out. And she was like, Would you like that? And I was like, Yes, please. So that's where we're at right now. And honestly, it's the most elated. I I I it it it genuinely helps because I've never been able to do that before. Rwy'n gweithio ar ymwneud ymwneud ymwneud ymwneud ymwneud ymwneud ymwneud.

And I was like, Oh, don't worry, I'll figure it out. It's fine and then they sent the email, they said, Are you still figuring it out? Has anything happened? Has anything come of that? And I was like, You know, no, I'm I can't afford one because I cover everything as I'm not getting funding. So I cover everything as far as backs and mums, psychotherapy programmes, workshops, support group sessions, everything is covered by me because I want the mums to access everything for free.

purely because I know a lot of the reasons why they don't get the help they need is is to do with money. Um and if you're of a certain socio economic bracket, things like therapy are a luxury to you that you will never um be able to to utilize and that's unfortunate because I think if I'm a massive advocate for therapy. I think everyone should be doing talking therapies. Um so that's why I cover it and that's why, you know,

But all my money goes to that and I don't even have enough to do promo. So the fact that we've grown to over a thousand mums without any promo at all just by word of mouth, it lets me see how much of a uh uh need there is for something like Black Send Mummers.

Um, so yeah, so they got back to me and they said, We'd like to help you because of the work that you do and that made me feel like I've achieved something. Like they can see that I'm really putting in effort here and how dedicated I am to it. Um much sure that they want to support me and that made me feel like there are some really lovely people in this world. You know, that was really nice.

This self discovery journey that you're on. What are s what are some of the things that you are allowing yourself to do? Things that you're making accommodations for for yourself, things that you're advocating for, that you perhaps previously weren't doing or didn't know how to do or didn't even know that you needed.

hole for me to be able to fit in. Um, because like I said, waiting for people to accommodate me, I'm gonna, you know, I'm gonna be let down a lot. So I have to make that space for myself and I'm very honest now. Look. I uh my brain doesn't work the same as yours. This is what I'm gonna need from you. I'm gonna need a bit of patience.

I'm gonna need some compassion and understanding. Um, I can get the work done, whatever it is that you're asking of me, but this is what I need in order to get the work done. Um before I wouldn't have dared say anything like that.

for fear that I'd be looked upon negatively. But then it's just the case of, well, that's not that's not me issue. That's not me issue. If someone's saying that, look, their brain works a little bit different. This is what they need support with. If I were to then look upon them negatively, that That's a problem with me as a person rather than whoever's asking for the support, right? Um, so I'd say in in work, in corporate settings, certainly I have been more vocal in making requests.

um for support, whatever that may look like for me and and really just not allowing for anyone to make me feel as though I don't belong in a space because I'm different in some ways.

Rydyn ni'n gwybod, mae'n gwybod, mae'n gwybod, mae'n gwybod, mae'n gwybod, mae'n gwybod, mae'n gwybod, mae'n gwybod, mae'n gwybod, mae'n gwybod, mae'n gwybod, mae'n gwybod, mae'n gwybod. and my mental well being, I need that that to be able to talk to people on a regular basis. And plus what I'm doing calls for me to be the most sociable person I can be. Um so what I did

is I I sought out a whole bunch of marginalized neurodivergent mothers um because they get it. That's that's what I did. You know, that's I recognize that's what I need to thrive. I need people that get it. Um, and they don't necessarily always get me or I them, but we get it as the collective and there's uh always a mutual respect, you know.

Um there are mums that I work with that are really blunt, really direct, and they will put it down to the the fact that they're autistic and um and I like that. We're owning that. I like that. We are accepting that of each other and it's not a bad attitude or or yeah, we're not rude or bitchy or anything like that. Any of the things that they like to call women that are not fawning and

Um, yeah. So I I like that we can be our true selves and and I and I surround myself with people that are wholly accepting of who I am and understand who I am. That's what I need in my environment to s to to thrive. Um and I kind of steer clear of people that I recognize um take issue w with with that, me being my true self.

'Cause you've talked a lot as we've been doing this interview about labels that have been given to you growing up and perhaps in inner narratives that you have yn ymwneud â'r cyfrifoldeb ar gyfer ymwneud â'r ymwneud â'r ymwneud â'r ymwneud â'r ymwneud â'r ymwneud â'r ymwneud â'r ymwneud â'r ymwneud â'r ymwneud â'r ymwneud â'r ymwneud â'r ymwneud â'r ymwneud â'r ymwneud â'r ymwneud â'r ymwneud â'r ymwneud â'r ymwneud â'r ymwneud â'r ymwneud â'r ymwneud â'r ymwneud â'r ymwneud â'r ymwneud â'r

odd kid. I used to have the weight of the world on my shoulders. I used to stay awake at night and lose sleep worrying about homeless people and people that were starving and who's looking after the animals and making sure the dogs have food and I'd literally cry at night at one AM in the morning. as a nine year old worrying about that kind of stuff. Um so what I would say

What I would probably say to myself is um don't lose your empathy. I was a very highly sensitive child. I think rejection dys uh sensitivity dysphoria Was at play. So everything kind of served as a rejection to me, and that was really upsetting. But I want I would like to say something that would help me to recognise the value of being an overly sensitive person.

um and being an overly empathetic person because there is so much value in it and I would like to tell myself that empathy, that level of empathy and that level of sensitivity. um that I have I had as a child has served me so well in what I do now. And it's the making of me.

Um, I really want to work on promoting what what we do because I know there's so many mums out there that are isolated, have poor mental health and just kind of need that sisterhood, need that support. Um

And so I know there's work to be done. So whilst I am very happy at the community of women that we've created and Yes, once there's a mum that's suffering or or needs some help or is going through challenges, once she's voiced that in the group, we'll have about ten other women coming to their aid asking what support she needs.

how they can help her if there's letters that need to be written up, if there are forms that need to be filled, we'll go down to the school with you, we'll advocate on your behalf. And they're all mums in the same position with children who are neurodivergent. you know, once I think about that dynamic, I'm so, so proud of what we've built together as a sisterhood. Um, but also I I do recognise that there is a lot of work to be done.

families of children with needs and how to better support individuals who are neurodivergent and better support individuals with mental health struggles as a community. I think. educating. is really important. I I work, I I do training for local authorities right now. I'm working with the social workers. in Redbridge Council, how to support families with SEN children. I think educating the support network of the mums, so local authorities, schools,

um send services, anyone that works with the mums, letting them know how their mums want to be best approached. And we do that by sitting with the mums and doing surveys and and speaking with them about what it is that they'd like to see as far as support. from their immediate support networks. We even work with the families. We work with the religious centers, the mosques, the churches. Um and we almost have like a co-produced uh program where the mums have their say and their their input.

of what support looks like for them. Again, not a tick box exercise, but what they genuinely need as far as support.

Um and so I think getting that out to as many people as possible so that we're building up our community from the inside out. We're educating the mums, we're educating the family and we're going back in, we're educating the services that that the mums and the children work closely with, um, so that the mums recognize that they can finally be vulnerable and get the support that they need. we don't get afforded the luxury of vulnerability a lot of black mums um in the in the Western world and so

I'm really working on ensuring that they know that they can be they they will be caught in their vulnerability, in them expressing what they need, they will be caught and they will be held. Um, you know, they're not gonna go through the net.

a GoFundMe. So if you Google Black Send Mummers GoFundMe, you can find um our GoFundMe page and you can support us that way as well. Every little helps. There is no donation that's too small. It all goes towards supporting the mums. Um and you know, we're very thankful for anything that we can get.

It's not about hitting children. It's about trying to figure out what the child's needs are, what they're trying to communicate, and meeting those needs.