Choosing Me: From Diagnosis to Advocate: Sydney Elaine Butler
Sydney Elaine Butler- Bio
HR Professional | Founder, Speaker, and HR/DEIA Consultant at Accessible Creates | DEIB Facilitator | They/Them Pronouns
It is Sydney’s understanding that their professional purpose must be to ensure that everyone has the opportunity to be successful regardless of barriers in their way and that they must as a professional remove these barriers.
Sydney conducts training and consulting for other companies on how to be more Accessible and Inclusive from a Human approach and how to recruit and retain more diverse individuals through the lens of Intersectionality/Human Resources as well as other areas of Diversity, Equity, and Inclusion in an authentic manner at the company they founded called Accessible Creates due to understanding the barriers that exist within the workplace for diverse individuals.
Sydney is also a Founding Member of InHeartSight (IHS) which is a diverse community of professionals from across Canada filling the gap in existing services for recent women immigrants. Where they are on a mission to ensure that every woman who comes to Canada has the right skills, and the right job, at the right time.
Contact Links:
Summary:
When Sydney Elaine Butler speaks, you can't help but be drawn into the raw and transformative power of their voice. As the founder of Accessible Creates, Sydney lives with autism, CPTSD, and fibromyalgia. Their conditions are not just a backdrop but a driving force behind their commitment to fostering disability-inclusive spaces. Their experiences bring hope, showcasing the balance between setting boundaries and leaning into self-care, all while pushing for change in professional settings that have for too long misunderstood and underserved those with invisible conditions.
Our conversation takes us through navigating multiple health conditions, the nuances of Complex PTSD, and the impact of early intervention and accommodations for autism. Sydney's open-hearted sharing of the strategies that help manage their health—be it through self-care routines or setting firm personal boundaries—offers listeners a firsthand look at the strength required to choose oneself daily. But it's not just about surviving; it's about thriving and using one's voice to pave the way for inclusive work environments and societal recognition of individual normalcy.
Sydney's story isn't just an individual triumph—it's a call for everyone who has ever felt marginalized or misunderstood. We wrap up with a powerful discussion on the necessity of self-advocacy and the creation of a compassionate support system.
Sydney's journey is a testament to the resilience of the human spirit and the transformative power of community. Join us as we embrace the lessons and insights from someone who's reshaping the conversation on living with invisible conditions and changing the world, one inclusive step at a time.
Takeaways:
Self-Advocacy and Choosing Yourself: Self-advocacy is vital for those with invisible conditions. It's about knowing your needs, setting boundaries, and putting your well-being first to effectively manage life. It's crucial for securing needed accommodations and support.
The Impact of Language and Words: Words deeply influence how we see invisible conditions. Mindfulness in our language is key to a respectful, inclusive environment, helping lessen stigma and enhance understanding.
Ending the Stigma Through Conversation and Understanding: Fighting stigma against invisible conditions needs open, honest talks. Aim to understand and support others by validating their experiences, and fostering empathy.
Reflection and Personal Growth: For those with invisible conditions, self-reflection is a path to growth and fulfillment. It encourages self-advocacy and the drive to effect positive societal change.
Creating Inclusive Environments: It's critical to mould societies and workplaces that cater to diverse "normals" for genuine inclusion. This means systemic changes for equal opportunities and recognizing diverse contributions.
Support and Understanding in Ending Stigma: Ending stigma demands collective efforts in listening, understanding, and acting. Supporting those with invisible conditions leads to a more inclusive, respectful world.
Definition, Resources and Example Accommodations:
Autism
Definition: Autism Spectrum Disorder (ASD) is a developmental disorder that affects communication and behaviour. Although autism can be diagnosed at any age, it is said to be a “developmental disorder” because symptoms generally appear in the first two years of life. Individuals on the autism spectrum may communicate, interact, behave, and learn in ways that are different from most other people.
Online Resource: Autism Speaks - A leading autism advocacy organization that provides a comprehensive guide to understanding autism, resources, and support.
Example Accommodations:
Workplace: Provide a quiet work environment or noise-cancelling headphones to reduce sensory overload, allowing for written instructions, and flexible scheduling.
School: Use of visual aids in teaching, allowing extra time for tasks and exams, and providing a quiet space for breaks.
C-PTSD
Definition: Complex Post-Traumatic Stress Disorder is a condition that results from chronic or long-term exposure to emotional trauma over which a victim has little or no control and from which there is little or no hope of escape, such as in cases of domestic violence, repeated abuse, or hostages. Individuals with C-PTSD may experience difficulties with emotion regulation, consciousness, self-perception, and interpersonal relationships.
Online Resource: The National Center for PTSD - Offers extensive resources on PTSD and C-PTSD, including treatment options, self-help strategies, and research.
Example Accommodations:
Workplace: Flexible work hours to accommodate medical appointments, creating a supportive environment, and allowing for breaks when needed.
School: Providing extensions on assignments during times of increased symptoms, access to counselling services, and permission to leave the classroom if feeling overwhelmed.
Fibromyalgia
Definition: Fibromyalgia is a chronic condition characterized by widespread musculoskeletal pain, fatigue, sleep, memory, and mood issues. Researchers believe fibromyalgia amplifies painful sensations by affecting the way your brain and spinal cord process painful and nonpainful signals.
Online Resource: National Fibromyalgia Association - Provides information, support, and resources for people affected by fibromyalgia.
Example Accommodations:
Workplace: Providing ergonomic workstations, allowing flexible work hours or telecommuting options, and permitting time off for medical appointments.
School: Allowing for rest periods during the day, providing extra time for assignments and tests, and allowing the use of technology to assist in note-taking and assignments.
Chapters:
00:00:00 Advocacy and Self-Advocacy in Disability
00:05:53 Challenges and Advocacy in the Workplace
00:17:14 Self Advocacy
00:23:12 Disability Inclusion and Setting Boundaries
00:32:15 Advocating for Yourself and Others
Transcript
Sydney Elaine Butler 00:00
And again in 2017, I kind of hit that rock bottom because of all the things I dealt with and I was like I had to start choosing me completely, you know, and I think that's where I stemmed from. It's like I need to choose me in everything I do and if I'm not gonna advocate for myself, who is, you know? And so it was kind of it was really a mindset shift because I was like I feel like I always used to put others before myself, especially in high school too, and there's also had to do with not since then, but really understanding. That's like I don't want to deal with the nonsense anymore. I want to get better. I want to look like the fullest. I want to enjoy my career. I want to find the love of my life. I want to do all these things. I want to enjoy and wake up every morning with a smile on my face as much as I possibly can.
Tim Reitsma 00:48
This podcast is supported by storiedworkcom. Do you ever struggle to get your thoughts written down in a clear and structured way? I often do, and when I'm planning my podcasts, scripts or articles, I have so many ideas in my head and I struggle to get them organized in writing. With storied, all I need to do is speak in my thoughts and the tool automatically organizes my ideas. I love it because it provides feedback and prompts me to fill in any gaps, to make my message crystal clear. Storied was founded by dyslexic physicist who needed a new kind of tool to write. What their team discovered was that seeing your thoughts and ideas turned into clearly structured texts unlocks potential for almost everyone. If you're having trouble translating your thoughts into clearly written content such as articles or social posts, try storied for free. Go to storiedworkcom. Do you often put others before yourself at the expense of your own well-being? I admit I have and I still do. I want to help others in saying no, in setting boundaries isn't something I'm good at.
01:49
Hey, tim here, and thanks for tuning into another episode of the Invisible Condition podcast, where we talk about advocacy and unusually normal things, the conditions, diseases and illnesses we live with. We will end the stigma of invisible conditions by empowering voices, and today's voice is brought to us by Sydney Elaine Butler. Sydney lives with autism, cptsd and fibromyalgia, and when studying employment law while pursuing their human resources degree, they found out firsthand that discrimination is real. So Sydney decided to turn their conditions into a force for advocacy and inclusion. Sydney shares their journey of advocacy the highs and the lows, and how choosing to prioritize their needs leads to creating change.
02:31
Whether you're navigating these conditions yourself or looking to supporting someone who is, this conversation is for you. Have a listen. Well, sydney, it has been a long time coming for you to join the Invisible Condition podcast. We've known each other. We connected years ago and then I left an organization and launched Invisible Condition. And here we are. I am very excited to have you on, for a variety of reasons, but enough about me and me talking. Who are you? Let our audience know a little bit about who you are, who am I?
Sydney Elaine Butler 03:07
That's a huge question, but let's start there. No, no Biggie. So yeah, I'm Sydney Elaine Butler. I think one of my biggest identities that I am a founder of a company called Accessible Creates. We provide training and consulting to companies and to better support disabilities in the workplace, and so I studied HR in school, worked in HR human resources for a little bit, and really saw that it was not accessible and inclusive to people with disabilities. And I also worked in a recreational environment perhaps in school for human resources and realized how my supervisors and my coworkers treated me as a decrease in becoming more disabled and how they treated my coworkers and my friends that also had disabilities in the workplace. And so I decided to start my company to tackle these issues and advocate for myself and advocate for others like me. And so I was diagnosed with autism at a young age, and then as a teenager, I suffered from depression, and I think that led to also getting a CPTSD diagnosis and that turned into also getting diagnosed with fibromyalgia.
Tim Reitsma 04:16
Wow, so much right in there Getting to know you in a minute and a half. First off, well, thank you for trusting us with this story and the story of who you are and even what led you to start your business. Because I've connected with so many people over the last few months and some, including me, for many years, would have just kind of hit, started to hide or hide their disability, not say you know what. There's some discrimination going on. I don't like this. So I'm just going to start a company and tackle this Like that takes a strong and brave person. So good on you for that.
04:55
Thank you and you shared with us. You're diagnosed with a few conditions autism, cptsd and fibromyalgia. Can you share a little bit about the definition of your conditions?
Sydney Elaine Butler 05:13
Yeah, I feel like there's so many definitions but and it's how you sometimes very different from how you experience them. But basically with autism kind of I consider it like different processing. You know, take some of these things. We long to process information. I see the world kind of differently and Sometimes I do things differently. You know, I start our own business to tackle this issue and someone's like you know that.
05:38
The girl. That's an interesting to come about that problem and just seeing the world a little differently and kind of also pattern recognition is a huge thing. Being autistic I'm like I love patterns and I see a pattern and I love that and so that's that condition. And I think we see PTSD, which is complex post-traumatic stress disorder a lot people just know of as PTSD. But PTSD is usually one incident on that kind of that was traumatic and that after not getting that care it leads to that.
06:07
Ptsd Complex is little traumas, even though all trauma is big. Having little traumas or having repeated trauma over a series of years and how that impacts how you show up. And also with traditional PTSD there's flashbacks. You know people see and they get triggered. You know they have that reaction and they see it. But then with the CPSD it's more emotional. So when I feel the emotions of how I felt during that trauma it can cause me to spiral and if I were my elder I Like conditions having lip-flop in your legs, I'm having difficulty walking and also really bad brain fog.
Tim Reitsma 06:46
Okay, wow. I think I said wow like three times already. So you live with multiple conditions. How, how is your day to day? I'm curious is do you have extreme highs, extreme lows, and and how do you navigate?
Sydney Elaine Butler 07:06
I really do have extreme highs and lows. I feel like I used to have more extreme highs and lows. We're understanding what my body and how my mind was actually interacting and dealing with these things and now that I know what I'm dealing with and as a business owner, it kind of makes for more flexibility. So, like Just to be honest with you, I was so tired before this podcast. I was like I'm gonna have a quick 15 for a quick 15 minute nap because you know I had a nightmare last night and then I'm practicing my quality of my sleep, which is a direct result of my CPSD, and so I woke up feeling extra sleepy. It's also snowing here, so that doesn't help.
07:44
The weather can impact any of my conditions and so, understanding that, something that's being a little patience with myself. But I have to-do lists. I have to list for my work, stuff for to do list for volunteering. I also now even have a to-do list for self-care. So, like I did my workout this morning in my you know my stretching and have all on my to-do list because otherwise I would forget what to have to do, you know, work and also to take care of myself to be able to do the work I'm doing and to continue, you know, change the work that I want to.
Tim Reitsma 08:22
I'm a huge fan of naps. I love the 15 minute nap. I feel so refreshed. I have a friend who just can't nap, be so tired and not nap and I feel so bad I feel like the optimal nap is 26 minutes 26 minutes.
08:37
Okay, I may try that today because, like you, I'm feeling a little tired. But I'd like to back up just a bit because I know how this affects your day to day and I would love to as much details little details you want to share. Just about the diagnosis story I know you'd mentioned autism at a young age and the other conditions came later, a little bit later on, but how was it at a young age being diagnosed with with autism?
Sydney Elaine Butler 09:06
Yeah, I think I didn't really understand what it meant, even though you know I got that diagnosis because I also have to go to speech therapy Because I couldn't say my arms properly, I would speak too fast sometimes they'll do, but understanding that when I would get supports in class, in the classroom and again to go to that speech therapy, I would thrive.
09:28
And then when I wouldn't have those supports I'd be like there's something different here or I've been feel Different and it was kind of my normal. I didn't recognize that it was different, even though I can see from my classmates in school setting they're not going to speech therapy, they're not getting, you know, they don't have to have. I had a pencil and I had the grippy thing Because of my mobility at my hand and they go, that's cool that you have that tool and I was like, oh yeah, I guess it is. I didn't realize at the time it was an accommodation to help me and so it was kind of my normal. But also seeing that it was different from my classmates was an interesting experience and I didn't really understand what it meant to, because growing up as a girl, that's not to stick instead of a boy, and so I think that's also a very different, that's not to stick instead of a boy, and so I think that's also a very different experience.
Tim Reitsma 10:24
Yeah, even like I said, even just how you grip your pencils, you look back now as seeing that that was an accommodation and I'm sure that that is also now informing the work that you're doing, as you go into workplaces and talk about disability, inclusion and accommodation and accessibility.
Sydney Elaine Butler 10:42
Yeah, I think there's so many great advocates out there that are advocating for now being diagnosis adults and now, in retrospect, their understanding. This is what I did as a kid. It's clicking now for them and I was like I knew I had accommodations as a kid. I just didn't know truly what it meant. But also I know my experience of you know being different.
Tim Reitsma 11:09
Yeah, the language that you've used a few times, that I've picked up on, is my normal and that directly plays into and not even plays into but lends itself to the purpose and the mission of invisible condition. You know, my normal is different than your normal, and so how do we create a society that and workplaces, school systems that accept my version of normal, because my version looks different than your version, but yet I'm normal? I think I'm normal, maybe not normal. I don't like to be classized normal, but this is my normal.
Sydney Elaine Butler 11:46
Yeah, I think normal is very subjective, but I think as a society we try to make it objective. Almost it's like this picture of what normal is supposed to look like. But again, we all have different normals and different levels of who we are and we you know, in our lived reality of what makes our everyday life what it is. And so really understanding that when you, I think, when society and organizations and school settings, realize that there's no right to be normal and that if you really you know, you foster the person where they're at and help them grow and you know, meet them where they're at, then real change can happen.
Tim Reitsma 12:28
Then invisible condition and your business would just like okay, guess where I'm? Because we've created these, these settings where people can show up as my, normal or your normal.
Sydney Elaine Butler 12:40
I always joke, I'm like my job is to put myself out of business Because, you know, even though it's like, I love what I do and it's like, but I'm hoping for a future where I don't have to, you know, fight so hard for you know what is normal and for my rights and other people's rights.
Tim Reitsma 13:00
Let's talk a little bit about that. You are a fierce advocate if. I am allowed to use that word fierce, and I think you are. You're all over LinkedIn and social media. You're doing amazing work. Let's talk about that because when you were in school you saw, and then in the workplace, and you saw right away that there's a need here, I'm curious if you can talk to us a little bit about that need again as much or as little detail as you can.
13:30
And then, how did that? You then turn that into a catalyst to starting a business and advocacy business?
Sydney Elaine Butler 13:37
Yeah, I think. So, seeing how I remember and I was in employment law class and human resources and in drug school I was in business administration, human resources and I take a lot of law classes because legislation I'm actually a legislation nerd I love my classmates. We had a case specifically around accommodation in the workplace and my classmates look, wait, wait, wait, wait, back up, back up. As we're going through the case study, People with disabilities actually went into the workforce.
14:10
Why would they want to do that? They get paid by the government. They just stay home. They don't have enough skills for that. I'm just like I'm sitting right here. That was kind of like my light bulb far into my butt moment. I knew something was wrong before that, but I was like, okay, if these of the people that are about to enter human resources and about to go into the business world and recruit people and want to retain people and they're not thinking about how do they retain all the different kinds of people and being it was just like okay, I need to do this is going to be my niche within human resources because there's clearly a need for it and I need to advocate for myself and I need to advocate for others like me and knowing that if people are about to enter the workforce for like this, I know other people in the workforce already feel like this. It's people with disabilities that have a discrimination against us, so I was like I need to do something.
Tim Reitsma 15:12
I also, maybe not so much the legislation. Maybe you and I will talk about that offline because I have an idea around that, but I love reading studies and studies from big name consulting companies around disability inclusion, whether it's Accenture or here in.
15:28
Canada. There's a few other organizations, national organizations, and every study says that the people with a disability a parent or not a parent is the most underutilized and untapped workforce there is. So if you're listening to this and maybe you're an individual looking to enter the workforce, there's opportunity for you. Maybe you're in HR and you're listening to this and maybe you need to pause and relook at your disability inclusion statement. And if you don't have one, talk to myself, talk to Sydney there's others as well because we can support you on that, because it's so, so important.
16:05
If we want to create places that are feeling included, we have to include everyone.
Sydney Elaine Butler 16:13
Yeah, it's so interesting. And then it's official, because disability covers so many different backgrounds. You know, if you're LGBTQ2PS plus, if you're black, if you're Asian, it doesn't matter, it can happen to anyone at any time. And so it's very frustrating sometimes that people are still underutilized labor market and don't understand that. People are like, oh well, again, go back to the norm. It's like, oh well, I have to do more, I have to do accommodations, I have to do a little bit more work, you know, and it's like, in the long run, it's going to help your company, it's going to help that increase inclusion, and if you really want that inclusion, we have to be at the table.
Tim Reitsma 16:58
I want to go back again to you have a few other diagnosis as well, and CPTSD and fibromyalgia. Would you be able to share a little bit about the diagnosis journey for those and again, as much as little detail as you as you're able to?
Sydney Elaine Butler 17:13
Yeah, it was. So 2017, when I was still in my, I have my degree and also my diploma from the same institution at Sheridan College, because I was so thankful that they did a duty completion program. And so I in 2017, was a very trying year for me. And so the following year, until then 18 I would be like hey, no, you have PTSD. And it's like what do you mean? It was very complicated.
18:23
And then I started working helping kids, teens and adults with disabilities and I was getting my legs. I was like I would have trouble walking sometimes or my legs would be very stiff and I was just like my Body felt like it was failing me and I didn't understand what was happening and I would bring it to the doctor. So you just fine, you just, you know everyone has bad leg days or you know you just push yourself too much. You know, maybe just take more rest days, because I was working a lot of hours to at work and it was very physically demanding. But I was like no, this isn't fair, right and and Actually there's a link between PTSD or a CPST with phabromyalgia and how the trauma is stored in the body, and so that there was a correlation there.
19:10
And I was also like I'm like, because I started in my right leg and then I was like, okay, my right leg is in a lot of pain. Then I was like, oh, now it's in my left leg and then sometimes it's a both legs and so just being it was very frustrating. I was like what is happening to me? I'm like I was only you know 22 when this was happening and I was like I don't understand and Then also had the bad brain fog and all these different things again. Tell this to my doctor. Really, I had to again self advocate for myself and be like no something, something's not right.
Tim Reitsma 19:42
There's a real theme to your story and that theme and you just said it is self advocacy. That advocacy I took a note down, as you know being dismissed by your, even your doctor, and I know again, I've talked to so many people with invisible conditions and and being dismissed. I've been dismissed numerous times as well. I live with arthritis. It's like, oh, it's just morning stiffness. I'm like, ah Well, my knee is the size of a basketball. I don't think that's morning stiffness. And but you kept advocating for yourself. And what was that driver?
Sydney Elaine Butler 20:14
I didn't. I haven't always been this over advocate. I think. I work with kids, teens and out of disabilities, and so I was advocating for them and About, you know, into my career. You know, I can't do real work if I don't advocate for myself, if I don't take care of myself first.
20:30
And I think, and again in 2017, I kind of hit that rock bottom because all the things I dealt with and I was like I had to start choosing me Completely, you know, and I think that's where I extend from. It's like I need to choose me and everything I do, and if I'm not gonna advocate for myself, who is, you know? And so there's kind of it was really a mind, mind set shift because I Was like I feel like I always used to put others before myself, especially in high school too, and there's also had to do with since not since then, but we're understanding. That's like I don't want to deal with the nonsense anymore. I want to get better.
21:07
I want to Live life to the fullest. I want to enjoy my career, I want to find the love of my life. I want to do all these things. I want to enjoy and wake up with Every morning with the smile on my face as much as I possibly can. You know, obviously so have good days and bad days, especially with my conditions, but understanding that I want to enjoy the majority of my life and move forward and Make a difference. And in order to make a difference, it's start for taking care of myself and advocating for my needs so important I Need to choose me is what you said.
Tim Reitsma 21:41
I Need to choose me. That's sometimes not easy, is it?
Sydney Elaine Butler 21:50
No and.
Tim Reitsma 21:52
Yeah, it's especially. I've met again few people who are they love to support others. They are, you know, I wouldn't say necessarily people pleasers, but they just love to help and love to support. And and then do you find yourself getting to that point where it's like time out. I have to Make myself a to-do list and work out now.
Sydney Elaine Butler 22:14
I think that's why I make that self-care to do list. I thought I started that last year. I already had a work to do list. I had my volunteer to lose, and then one day I was like I'm not doing self-care as much as I should. I was doing it like once a week, maybe you know. I was like, oh, oh, yeah, maybe today I should work out, maybe today I should, you know, go for a walk. You know something as little as that. But it's kind of like out of sight, out of mind, and so I was like, oh, maybe I can trick my brain, knowing how stubborn it is sometimes to do it if it's all my to-do list. Now I have work on my to-do list, I have yoga on my to-do list. Yeah, I even have shower and brush my teeth on my to-do list, because some days it's very hard. But that's me choosing me. I.
Tim Reitsma 23:01
Love that. Choosing you Maybe that's the title of our podcast is it's me, I choose me, and so somebody is listening to this and it's really struggling. Yeah, it's going to be difficult to say no, but setting those boundaries. I was having a conversation with somebody earlier this the week that we're recording this about boundaries and how they how to set boundaries, and they said it takes a lot of willpower and it does, but it all ties together with advocacy. When you have to advocate for yourself, you have to choose yourself. It's making that choice and then it's setting boundaries, because it might mean you're saying no to things, or it might mean You're saying yes to things that are on your to-do list and no to things that aren't on your to-do list.
Sydney Elaine Butler 23:47
Yes, it's like sometimes I think boundaries is kind of like in the mainstream now and like it was like oh, I always have boundaries, boundaries, boundaries, boundaries. But I think a lot would don't really know what boundaries means or what it actually entails, and so just checking in with yourself is like what is, how can I best show up as myself in different situations? What boundaries do I have to put in place for myself, for others in my life or in my career? What boundaries represent plays to be able to not just survive but thrive?
Tim Reitsma 24:18
You have your diagnosis, you've chosen to be in this line of work accessibility, accommodation, disability inclusion and so I'm really curious being in this space. I know you've heard a few silly things, or I've heard some even I'll use the word micro discriminations or discriminations in Workplaces as going in as a facilitator or consultant. I'm curious Can you share a few of these little stories with us?
Sydney Elaine Butler 24:46
Yeah, I think, even when I have like a consultation with someone and they're like are you, are you one of them? I'm like, what do you mean? One of them Are you, are you one of them? And I was like Can you, can you allow me? What are you referring to? Do you have the life experience of having disability? And I'm like, why do you face it as like one of them?
25:11
Oh, this seems to be this disconnect that I'm you know. It's like, oh, you must if you're doing this work and you're doing it so well. You know it's like I have. You know, I'm just trying my best every day. You can't possibly actually have the experiences that you're talking about and it's like, no, because I have these experiences, I'm able to. I'm like, again, I had a nap before this call. Why are you? Or? I'm like, oh, this color is draining me. I'm gonna have a nap right after this.
25:41
You know, and understanding that it looks different on everyone and that I think also another silly question Sometimes is that, oh, you're too young to be talking about these complex topics, you don't know enough about it, and I know my experience him work, working with kids in teens and ages with his disabilities. Also my experience as being a kid in Teenage over disability and just really understanding that sometimes people it's so funny sometimes I think I, they know, I know they don't mean any harm sometimes, so they just like generally asking and that kind of also makes it more laughable, more funny. You know it, just like, what are you asking me right now? Or sometimes People I'm very racial, so my mom is from Diana and my dad is white my personal person of color and Sometimes people will be like, well, how is so that?
26:43
Are you gonna talk about disability from a race perspective, since you're black? Basically? And I'm gonna talk about it from a human perspective. It's all human If you want me to take that lens and you want me to add race into what I can, if that's what you would like and your organization needs that. But I'm just taking it from a human approach and a human lens to inform how to better support humans in the workplace that just happen to have disabilities.
Tim Reitsma 27:12
Yeah, I've heard it myself of are you sure you live with something, or what makes you that expert to talk on this and I say well, I'm not an expert, I'm an advocate and I'm very curious and I'm open to learning and yes, I live with multiple invisible conditions. Where's your washer?
27:32
And as soon as I mentioned washer, it usually gets people a little confused and sometimes intentionally awkward, because, yeah, living with an invisible condition is just that it's not apparent. And so, for having that conversation, the words we use matter so much, don't they? And I've gone into organizations to talk just about this topic. Is the words we use have impact?
Sydney Elaine Butler 27:58
Yeah, I think people. So I understand that people know words have impact, but sometimes people are just so careless with their words they don't mean to be malicious, and I talk about this in like, even if you don't mean to be malicious, so you don't mean to impact someone negatively. If you don't. When you're careless with your words, you don't know what impact you're gonna have and I think sometimes two people. But why didn't it mean it like that? So why did Sally interpreted that way? Actually, she's just being overdramatic because you know all these things. It's like when you don't care about what the words you're saying towards someone, and especially about someone, that's a real problem to occur.
Tim Reitsma 28:35
I was recording with someone on a very sensitive topic, a very a topic we don't talk a lot about in society. The topic is suicide, and we talked a lot about the language, and so that episode is coming out May of 2024, and the language matters. And so when we think of what you just said, it's like, oh, why are you so sensitive? Or why is that person, why did they take it wrong? Well, maybe they are kind of at their end of being able to process. Well, you don't look sick or you look tired. You should just nap. Why are you always tired all the time? Maybe you should check your iron levels. It's like, well, no, I live with something that's invisible, and this is the conversation is taxing on me and I'm tired, so I'm just gonna go and rest.
29:27
And I also agree that often the words we use there's often no ill intent, they're not meant to be malicious. However, that's not an excuse. In my world and I will correct someone now and because I've heard it, I've heard it all and I show the story often as it was a week before surgery and somebody said to me are you sure you need surgery? You look fine, like I haven't had a real meal in like four months. I'm living off of supplement diet, drinks and trying to be healthy enough for surgery. And it's that one that last. That was a catalyst for invisible condition. That was the moment of like we gotta end this, we gotta stop this. And I'm sure you hear it all the time too, even going into workplaces.
Sydney Elaine Butler 30:21
Yeah, I think that's like. I think sometimes, like, why does someone like I think like the term thin? You know why does thin mean healthy? You know there's so many ways of being healthy and being unhealthy and understanding that you never know what someone's struggling with or dealing with. And so just be very careful with your words and you know if someone I don't understand people who don't take people of face value it's like no, I am sick, I'm dealing with something, you know. And I think people sometimes, again, they wanna just be helpful and be like well, you don't look sick. Oh, the things that are being nice when they sit, they're like oh, you don't look sick. How am I being so nice that I'm saying Tim doesn't look sick? But it's like it's so invalidating and you know, people again need to really be careful and be kind with their words.
Tim Reitsma 31:13
Yeah, it's choosing your words, taking that pause. I've written pretty extensively on the blog about this and I'm pretty outspoken on this, and you've been very successful at advocating for yourself. I'm sure it wasn't always easy and you didn't stop, and you're not stopping advocating. If somebody's listening to this and saying I don't even know where to start, I don't know how to continue advocating for myself, whether it's at the doctor's office or in their school or with their friends or family or in the workplace. What would you say to someone?
Sydney Elaine Butler 31:49
I think I would say see, I'm gonna pause and choose my words carefully, I know. I think I would say take a moment to reflect on kind of what you want out of life. You know, and your current situation, and look at you know if it's in a relationship with your family or your career, is it what you want. If it's not, with what you want not, you know if you have it in your power to get it better. You know, and if you spoke up for yourself, you said and you put those values in place, if you spoke from a place of no, this is what I deserve, this is what I want, you know, this is I'm dealing with something that's impacting my life in a negative way.
32:39
You know, start thinking about what you really want and start advocating for yourself that way, and especially, I think, as advocates and as advocates, sometimes people actually want to advocate for other people, like I mentioned before, and so it's like if you advocate for other people, why would you not advocate for yourself that way? And that's kind of how I look at it for myself too, because I'm like, in order to continue advocating for other people with disabilities, because I think I started off by just advocating for other people with disabilities. I'm like you know that's not me, you know I was like end of the guys, but it's like in order to continue making impact, to continue living life the way you want and living it to the fullest, and to advocate for other people, you, it's. It's start for yourself, cause otherwise you're going to get burnt out, you're going to get tired, you're going to get resentful. That's like why, you know, I'm advocating for so many other people, but no one's advocating for me, but no one's going to advocate for you unless you start first.
Tim Reitsma 33:34
Finding that voice, finding your voice. I've written a bit about this as well, as I love what you said is taking a pause and reflecting on what do you want out of life, when do you want your life to go, what do you need? And that's what's missing now. And then it's practicing finding your voice, and I created a little model. It's up on on the website. It really is that reflection of you know, almost taking some of that emotion out, especially if you're talking to your doctor or talking to your workplaces. This is what I'm dealing with right now and this is what I need. So how can you support me? What do you need?
Sydney Elaine Butler 34:12
Or even working. You know, sometimes you don't know what you need, but you just know what you're currently getting is what you don't want, what you don't need, and so like, hey, I'm having that trust with your family, with your doctor, with your manager, your coworker, having that space and that respect to be like, hey, I need your support. I don't know exactly what that looks like right now, but can you work with me to figure it out?
Tim Reitsma 34:37
It's so important. I'm so glad you brought that up. Often, at least from my perspective, if I'm in the middle of something, if I'm in the middle of a flare or I'm having a bit of a crisis, a mental crisis and a bit of a breakdown, I don't know what I need, having that support system around you to just even say I'm living with something or going through something right now and I don't know what I need. But I just need your support and for that person who's on the other end for them to say I'm here for you whenever you need it, that's it. We don't need to fill in the blank. We don't need to say, oh, you're dealing with this, oh, here's a diet. Or here, try this supplement. Or hey, go have a nap. We don't need that. We just need, hey, thank you for trusting me with that. How can I support you? Simple and yet so hard.
Sydney Elaine Butler 35:36
Yeah, the first time my partner said that to me, I was like what just happened? I was like it actually worked, what's happening? And then I started crying because I was so. I just like you know it's hard, but it's like knowing that someone cares about you and I have to just be there when you're going through. Something Is everything.
Tim Reitsma 36:00
Yeah, when I was going through preparing for surgery I was at one of the lowest points I've ever been in my life, from even a physical and mental capacity, and a good friend of mine. He would call me up out of the blue and look at his number and go okay, I know who this is, I'm going to pick it up. And all he would say was, hey, do you have pants on today? And it was our little joke and he would text that to me and because he knew if I would answer no, then I probably needed a bit more support. But if I answered yes, I actually went for a walk. He'd be like okay, just checking in. And that was our little code and I'll never forget that. I'm sure if I go back through my text I'll have dozens of them from this person I love that and it's just these little check-ins to just check in with someone, right Without solution, just through curiosity.
36:59
I'm still learning this. My wife lives with arthritis and someday she shares that she's really stiff and my mind automatically goes to solution. And she corrects me often, and so it's a process. I'm working on it. We're not going to get, we're not going to be perfect at this, but even in our workplaces, if you're an HR and somebody's disclosed that they need support, you don't necessarily need to have the answers. Why don't you just say what do you need? Yeah, I think it's such an important lesson and something super important as we navigate this world of accommodation, accessibility and advocacy.
Sydney Elaine Butler 37:47
Yeah, I think, as long as you're willing to, hr is willing to try to help the employee as the manager willing to help that employee. Just, I think the key word is try. As long as you try like I think people are like, oh I want to try and I'm wrong as long as you try and somebody sees that you're generally trying and trying to be there for them and support them, you can never be wrong.
Tim Reitsma 38:09
Sydney, you're an inspiration to me.
Sydney Elaine Butler 38:12
And.
Tim Reitsma 38:12
I know you're an inspiration to so many. You have lived through a lot, you have a lot of life to live and you are just a fierce advocate going into workplaces, going. You're speaking publicly about this, about this topic, and that's so inspiring. And, as we look to wrap up, how are we going to end this stigma and I know it's a broad question, sometimes it's an easy question. I'm just curious from your perspective, how are we going to end the stigma of invisible conditions?
Sydney Elaine Butler 38:47
Yeah, I think the conversation. So you're doing a great step by having this podcast. I think really conversation and being people being willing to listen to the conversations and actually have these conversations and being willing to just try.
Tim Reitsma 39:01
You said having people listen to the conversation and in your line of work. How do you get people to listen, aside from like, hey, here's Sydney's coming into the workplace. You need to come and listen to what, what you have to say. How do you get people to listen?
Sydney Elaine Butler 39:19
I think kind of again meeting people where they're at.
39:23
So I've done like I love, a do a session about supporting neurodiversity in the workplace it's one of my most popular ones and engaging the audience and really, okay, how do they feel about this topic? How do they be receptive to it? Because sometimes I can have the same thing on the slides but it can go in completely different direction based on how the audience is interacting and how they're perceiving it. And that is the skill in itself. But you know, just being able to kind of read the people you're talking to and see where they're at and meet them or there and be willing to educate them and take more time if needed, and just if you know, you see, if you're willing to take that time, then they'll be at all that say that you're willing to take that time and be receptive to that, that they can take a little bit more time or that they need to talk about the various things in Pacific. I think just meeting people where they're at and leveraging that is a huge way to get them to listen.
Tim Reitsma 40:21
I think that's a great place to wind down our conversation. You know, it's stepping into our normal, as you said, my normal Sharing your story and meeting people where they're at. Some people don't want to hear it, but what I've found is most people are curious. They'll tell me more about that. That is such an important message to end on. So if you're listening to this and you live with something that's invisible, it's not apparent, and you want to step into your story, reach out to myself, reach out to Sydney. We'd love to have that conversation and help you embrace your story. And if somebody's looking to get ahold of you and wants to connect with you, where can they find you?
Sydney Elaine Butler 41:07
You can connect with me on LinkedIn at Sydney, elaine Butler.
Tim Reitsma 41:11
Perfect, and I'll have that in the show notes as well. Your contact information. I know you've got your website. We'll put that up there in the show notes. So again, thanks for joining me today. And if you are listening and if you have a story to tell, reach out, shoot me a note through the website. You head to invisibleconditioncom through the contact page there. And also, if you have the means, I would love it if you're able to donate. So if you're listening to this and want to keep the show going, every dollar that we bring in goes into helping the production of invisible condition, as well as for the song to your friends, your family, your coworkers, everybody. You can subscribe to the newsletter, all that good stuff. And so again, sydney, thanks for joining me today and for those who are listening, I hope you have a good one.
