Spina Bifida "Empowerment" Retreat
Hello everyone, I'm Katrina from Living with Disabilities. You're tuned into the Living with Disabilities advocacy website dedicated to helping people comprehend the disabled community. The core purpose of our website is to assist society in recognizing the full range of various disabilities and conditions. Accessibility is a key component of this understanding. Without accessibility, there's exclusion. This week, we'll share about an Empowerment event that Katrina participated in.
Before discussing this event, Living with Disabilities emphasizes that everyone is entitled to their own opinions and asks that the host's perspectives be respected as she shares her experiences over time. She will share her advantages and disadvantages.
In life, everyone encounters mental and physical challenges, including those without disabilities. However, this space is dedicated to and focused on individuals with disabilities. Consequently, you might encounter insights from individuals with disabilities, as well as from parents, guardians, and caregivers. This is the overarching concept of the website: a learning resource for those without disabilities.
In 2020, Katrina joined the Spina Bifida group via Diversibility, among other Facebook groups. That same year, she became a guest speaker to discuss her published cookbooks. Upon joining the Spina Bifida group, she discovered the empowerment retreat, which was then exclusively an in-person event. As 2023 progressed, Katrina returned as a guest speaker to instruct members on crafting their own bracelets. Fortunately, in 2021, the Spina Bifida Resource Network devised a method to enable individuals with disabilities to participate via Zoom conference calls.
Katrina's initial encounter with the Spina Bifida Resource Network Retreat occurred in 2021. This empowerment retreat is designed for individuals with disabilities, offering various activities and learning experiences each year. The proceedings of the events are kept confidential. Participants must be at least 21 years old to join these retreats. Living with Disabilities may express that these retreat events are highly beneficial, and ultimately, it's up to the individual to determine what they consider a valuable takeaway.
Here we are in 2024, and the Spina Bifida Resource Network, Empowerment retreat held its to-believe or not sixteenth retreat, not counting the Zoom feature.
Living with Disabilities will delve directly into the advantages and disadvantages of the event. Katrina will then share her observations and discuss the changes she believes are necessary. Identifying flaws in various aspects of life can lead to improvement, provided there is a willingness to make those changes.
Observations are crucial in life; we must live, learn, and grow to become better individuals. This concept is a significant element in the metaphorical Book of Life. Although it is a challenging lesson that everyone must endure, no one can choose what awaits behind the door once it opens.
Living with Disabilities would like to note that before we continue discussing the Empowerment Retreat, we wish to alert you to any words that may be triggering.
During a challenging period in her life marked by depression, Katrina discovered the Spina Bifida Resource Network. She had been silently struggling with her mental health, keeping it to herself until she sought help. Fearing judgment, she maintained a facade. Katrina's mental health struggles do not lead to suicidal thoughts but manifest as a lack of motivation, intermittent sadness, and a desire for solitude. She maintained her resolve throughout the discovery of the founding of the Spina Bifida Resource Network Organization. She was part of a group called Diverability, where Millie Gonzales, the chairman and a volunteer of the organization, invited Katrina to conduct a speaking engagement on 'Cooking with a Disability.' During this event, she discussed her two cookbooks: 'Frugality Living' and 'Outside of the Box.'
Following Katrina's initial speaking event, she learned of the Spina Bifida Retreat, which was exclusively for in-person attendance. However, the following year, they introduced a virtual component to accommodate those unable to afford travel.
During a three-year experience with Living with Disabilities at the SBRN "Empowerment Retreat" we will hand over the mic to Katrina to share what she has witnessed, and she'll share some pros and cons. We kindly ask that you respect her views, as she will respect yours in return. Please feel free to share your thoughts in the comments section, and the host will respond as soon as possible.
I attended my first virtual "Live Your Best Life" Empowerment Retreat, hosted by the Spina Bifida Resource Network (SBRN). They covered topics on Fitness and various other subjects; some have slipped my mind. However, I distinctly remember discussions on the use of Catheters, which emerged the following year, in 2023, around the same month, seemingly every November. Contrary to what its name might suggest, the Spina Bifida Resource Network is not solely focused on the condition known as Spina Bifida, or split spine. The organization boasts a legacy of over 40 years, offering services to children and adults with Spina Bifida and various other disabilities, not just in New Jersey but also in regions beyond its home state.
In addition to peer-led support systems and programs, they offer educational and recreational events, financial aid, resources, and advocacy. Their programs and events foster supportive communities and empower individuals by enhancing knowledge, self-care, skills, independence, and participation in school, work, and community life.
Katrina has noticed some pros and cons of living with disabilities in a group setting, which she believes are important to share with others. Living with Disabilities proclaims this assertively: We have all made mistakes that we couldn't recognize, yet they are evident to others. Thus, they highlight these oversights to us, so we can improve. We aspire for our community to excel, and this is the driving force behind the Living with Disabilities article on this event.
Pros and Cons
Pros
Creating a space for dialogue is essential, and having a peer-led group that covers various topics and discussions is key. Often, other forums may overlook the inclusion of individuals with disabilities in these conversations.
The retreat provided an opportunity for discussions on the range of topics introduced. It is essential to understand that these discussions are confidential, and the participants' responses are also.
At the retreat, Living with Disabilities and the host engaged in discussions that precisely addressed the topics they discovered. Therefore, A+
The enhancement of knowledge, self-care, and skills was achieved through various topics covered here, including different types of exercises. One such exercise was interplay, which involves moving your body in conjunction with controlled breathing. This style of exercise can be likened to improvisational dancing with sound, engaging both your body and auditory senses simultaneously.
Breaking into the power of the brain which holds onto wisdom, gaining information from the different topics at this event. Be your authentic self, basically, be yourself and don't try to be anyone else. This was Katrina's take on the session that was held by Jean Abbott, learning to accept my disability and knowing that my disability does not define who you are.
Jean Abbott, the speaker at the retreat, imparted considerable knowledge that resonated with many attendees, including the host.
The pursuit of knowledge offered much to learn from this session alone. Retaining that information, however, depends on one's memory. A+
Before concluding the advantages, it's important to acknowledge a few additional points worthy of recognition. Creativity and art offer powerful forms of expression, each with a unique voice. When the topic of Living with Disabilities is raised, Katrina's face lights up with a smile, as she wholeheartedly concurs with this sentiment.
There were some very good lessons to take away from a Gratitude box.
The final word is 'Self-Care.' Each day included time for a self-care break, beneficial for both in-person and virtual settings. A+
Life's drawbacks can be difficult to accept. However, confronting them is essential for identifying areas that require improvement.
Cons
In the realm of organizations, regardless of size, sponsorships are a constant, and they occasionally undergo changes. Such transitions are not inherently negative; as the organization Living with Disabilities might suggest, it all depends on the target audience.
This is where the grade scale will dip, and putty will be necessary to fill in the cracks. We cannot allow cracks within our community if we expect society to address its own lack of accessibility. We must mend our internal issues to present a better reflection for society to emulate.
"Living with Disabilities" is set to take the spotlight. The Spina Bifida Resource Network is an exemplary organization. It's important not to misconstrue "Living with Disabilities" when it highlights areas for improvement. Wherever there's room for refinement, "Living with Disabilities" is ready to offer advice. This guidance could be instrumental in steering your organization towards greater achievements.
We will backtrack a little bit, to 2023 and then we'll move forward. Before even going there, can we talk about funding for a bit? No one ever knows what's in another person's wallet, purse, etc. It's the same with an organization, to start an organization, Grants are funded.
Not everyone with a disability can participate due to cost. Living with Disabilities is commenting from the virtual aspect, as we have not experienced the in-person segment.
Implementing a sliding scale could simplify matters, as it has been an option in most organizations where Katrina has participated. Introducing this feature could assist those who are unable to afford full prices. Moreover, a sliding scale is particularly beneficial in understanding and accommodating individuals with disabilities or financial constraints.
A few topical conversations were quite uncomfortable, to say the least. If you jammed to Salt N' Papa's "Let's Talk about Sex" when this track came out, you can know where this is going. People with disabilities should have or have already learned about this. What made it worse was not "sex" itself. It's sex toys. This shouldn't have been a topic of conversation; it has nothing to do with disabilities. What type of empowerment message a person with a disability can walk away from? There are many question marks above the Living with Disabilities head.
Writing to a deceased loved one is a sensitive topic that has come up. It should be approached cautiously, as it's impossible to know if someone has recently experienced a loss. However, this topic does not necessarily align with the theme of Empowerment.
Catheters were a significant topic of discussion at each of the first, second, and third retreats. This is crucial information to be aware of. Although other equipment was not provided to accommodate individuals with various disabilities, it was noted that the host did not acknowledge this at each event.
How can other disabilities be accommodated? The approach is straightforward: inquire about their needs and, once an answer is received, offer resources and topics that will assist them in managing their disability and thriving despite it.
The overall perspective on participating in an empowerment retreat. Living with Disabilities has expressed disappointment in the offerings, not only at this retreat but also at the previous two. An empowerment retreat should abound with opportunities for skill development, confidence building, and networking with peers.
From 2023 to the present, they have both grappled with death, a topic that is incredibly difficult to discuss. This is because we can never truly know what someone else is experiencing, what they have endured, or the duration of their struggle.
Katrina, along with many others, struggled to maintain composure during her writing process in 2023. Such a topic of discussion ought not to have been brought to light.
Discussing end-of-life planning can be quite distressing, as there is little that feels empowering about death, although there are financial considerations to be made. Living with Disabilities emphasizes that an empowerment retreat should be a sanctuary for relaxation and respite. While some retreats focus on education, others are designed purely for relaxation.
Living with Disabilities discusses the Spina Bifida Resource Network Organization, the Empowerment Retreat, and the host Katrina's experiences over her three-year participation. In our community, where resources can be limited, we must support each other as much as possible. Improvement is always possible. Let's explore areas for enhancement, irrespective of the organization's size or the number of people involved in its operation.
Let's tackle the price range, not everyone can dish out money to purchase a ticket to fly. etc. This even goes as far as attending from the comfort of their own home, Price scale, offering scholarships comes in handy as well. Like, for different companies are sponsoring, there should be some places or persons able to pay for those who can't pay.
Moving forward, comprehending the registration form can be challenging for individuals with various intellectual disabilities. The form should be designed to be easily understandable for everyone, taking into account different levels of comprehension. This requires empathy and the ability to see things from another person's perspective. Those living with disabilities often appreciate efforts to make understanding easier by using clear and simple formats.
Offering volunteer hours presents a valuable opportunity, but it should be clearly defined what entails. A form ought to be provided to those willing to contribute their time, ensuring they understand their responsibilities. Additionally, a volunteer information sheet should be included.
In embodying the essence of Empowerment, consider what universally beneficial topics you want to present at this retreat. Reflect on the experience from the perspective of the participants and what your stance represents. As the Spina Bifida Network, you cater to individuals with Spina Bifida. However, considering the inclusion of various disabilities, it's important to determine what takeaways will be valuable for those with different needs, especially since not all disabilities require the use of catheters. Engaging with others to understand their specific needs and benefits can guide the development of relevant discussion topics. It's prudent to avoid the topic of death as it's highly sensitive, and one cannot fully understand another's experiences with loss. Death is a natural occurrence that comes in its own time. The question at hand is, how can discussing it be beneficial in the present moment? When death does happen, families and their loved ones already have their plans written out already. How will these things benefit them now?
In conclusion, as the Living with Disabilities event comes to an end, it's important to ensure that those who have participated virtually receive the same recognition as those present in person. Just like attendees who leave with a bag of goodies, virtual participants should also be included. Inclusion, not exclusion, is key.
We need a transformation, but how can we expect to see change if we don't embody the image we wish to project to the world?
Podcast link
The Spina Bifida Resource Network Link
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