Reflecting on Self-Determination

Figure Climbing Stairs

In the last thirty years, the body of literature concerning self-determination has expanded significantly, with a specific emphasis on transition to adulthood. Upon revisiting my own experiences, particularly in light of the impactful article titled “Advice from Adults with Physical Disabilities on Fostering Self-Determination during the School Years,” it is evident that self-determination extends beyond theory to shape various approaches for families, education, and the broader community.

Self-Determination is defined as “a blend of skills, knowledge, and beliefs that empower an individual to engage in goal-directed, self-regulated, and autonomous behavior” (Teaching Exceptional Children). Self-determination serves as a guiding principle aimed at fostering independence and empowerment for people with disabilities.

Positive Trends in Self-Determination (1998-2024)

The last few decades have seen significant advancements in promoting self-determination for individuals with disabilities, driven by technological, educational, and policy developments, alongside increased family and community involvement. Here is an overview of some key positive trends:

  1. Technological Integration: Advances in assistive technologies have significantly improved autonomy for individuals with disabilities (Smith et al., 2021). For example, the widespread availability of screen readers and voice recognition software enables people with visual impairments or mobility limitations to access digital information and communicate more independently.
  2. Educational Reforms: The inclusion of self-determination in curricula has led to notable improvements in student autonomy and self-regulation (Shogren, 2018). For instance, schools implementing project-based learning approaches provide students with opportunities to make choices, set goals, and take ownership of their learning process, fostering self-determination skills.
  3. Policy Advocacy: Increased advocacy efforts have resulted in better policy frameworks supporting the rights and self-determination of people with disabilities (Turnbull & Turnbull, 2006). For example, lobbying for legislation mandating accessible infrastructure in public spaces ensures that individuals with mobility impairments can navigate their communities more freely, promoting independence and self-determination.
  4. Family Engagement: Active family involvement in education consistently produces positive outcomes. For example, parents supporting their children’s exploration of diverse interests by enrolling them in community art classes or sports teams fosters self-discovery and personal growth (Carter et al., 2016).
  5. Community-Based Support: Broadening access to community resources promoting independence and self-care enables individuals to thrive in environments that foster self-sufficiency. For instance, local libraries offering free workshops on financial literacy empower people including people with disabilities to manage their finances autonomously, enhancing their self-determination.
  6. Peer Networking: The proliferation of peer support and mentoring initiatives is essential for nurturing self-determination. For instance, online support groups connecting individuals with chronic illnesses provide a platform for sharing coping strategies and experiences, empowering members to advocate for their healthcare needs and make informed decisions about their treatment options.
  7. Inclusive Education: A heightened focus on inclusive education environments fosters not only participation but also self-determination among learners. For instance, schools implementing inclusive practices ensure that all students, regardless of their abilities, have equal opportunities to engage actively in learning, thereby promoting autonomy and self-advocacy skills.
  8. Research and Development: A growing investment in research is vital for tailoring self-determination models to meet the diverse needs of individuals. For instance, ongoing studies explore innovative approaches to empower individuals from various backgrounds, such as developing culturally sensitive interventions or harnessing technology to enhance accessibility to self-determination resources.

Negative Trends and Emerging Challenges

Despite progress, various negative trends and emerging challenges persist, reflecting disparities in access, cultural and economic barriers, and systemic issues in implementation and support. These challenges include:

  1. Inconsistent Access and Implementation: Disparities in program availability and quality exist across different regions and socio-economic levels (Lee et al., 2008). For instance, while urban areas might offer comprehensive vocational training programs, rural communities may have limited access to such resources.
  2. Underutilization of Technology: Despite technological advancements, assistive technologies often remain unused due to funding shortages or lack of training (Smith et al., 2021). For example, specialized communication devices may sit unused in schools due to insufficient training for educators on how to effectively integrate them into the curriculum.
  3. Overprotection by Families: Some families restrict autonomy, hindering self-determination and skill development (Turnbull et al., 2007). For instance, overly protective parents might hesitate to allow their child with a disability to participate in independent living skills programs, fearing potential risks.
  4. Cultural Barriers: Integrating self-determination practices into culturally diverse settings can be challenging (Zhang et al., 2005). For example, traditional cultural norms may prioritize family decision-making over individual autonomy, making it difficult for individuals to assert their independence.
  5. Economic Constraints: Economic limitations hinder access to essential tools and programs supporting self-determination (Stang et al., 2011). For instance, individuals from low-income families may struggle to afford transportation to attend community-based support programs or to purchase assistive devices.
  6. Lack of Professional Training: Educators and caregivers often lack adequate training in promoting self-determination (Wehmeyer et al., 2018). For example, special education teachers may not receive sufficient training on how to empower students with disabilities to make choices and set goals for their education and future.
  7. Legislative Hurdles: Inconsistent legislative support for disability rights can impede self-determination efforts (Shogren, 2018). For instance, variations in accessibility laws between states may result in uneven access to public spaces and services for individuals with disabilities.
  8. Public Awareness: Continued efforts are needed to enhance understanding and acceptance of disabilities (Palmer et al., 2013). For example, public awareness campaigns can help combat stigma and promote inclusion, fostering environments where individuals with disabilities feel empowered to assert their rights and pursue their goals autonomously.

These challenges highlight the complex landscape of promoting self-determination, where technological and systemic improvements must go hand in hand with changes in training, legislation, and community support to truly empower individuals with disabilities.

Positive trends such as technological advancements, educational reforms, and increased advocacy efforts have contributed to promoting self-determination. However, negative trends like inconsistent access to resources, underutilization of technology, and cultural barriers underscore the need for ongoing efforts in this area.

Supportive families can empower individuals to develop self-determination skills, while overprotection or lack of support may hinder their growth. Addressing these challenges requires a comprehensive approach involving policy changes, technological innovations, and fostering supportive familial and community environments.

Achieving self-determination involves a multifaceted approach, with technology and policy advocacy serving as key pillars. Technological advancements provide crucial tools for enhancing accessibility, communication, and independence, from assistive devices to innovative applications.

Policy advocacy plays a vital role in shaping legislation to safeguard the rights and needs of individuals with disabilities, breaking down barriers and fostering inclusion in education, employment, and community life.

Additionally, family dynamics play a significant role in shaping this self-determination journey, where supportive environments nurture confidence and resilience, while stigma or overprotection may constrain autonomy.

Recognizing and addressing these ongoing challenges is vital in creating inclusive environments where individuals with disabilities can truly thrive. It requires concerted efforts from policymakers, communities, and families to dismantle barriers and foster a culture of empowerment and acceptance.

Web Resources for Further Exploration

  • Self-Advocacy Online: A resource for learning and networking among individuals with intellectual and developmental disabilities, offering educational materials and opportunities for connection.
  • Pacer Center Self-Determination Resources: provides comprehensive resources related to self-determination, including practical tools to support the empowerment of individuals with disabilities.

References

  • Carter, E. W., et al. (2016). Parent involvement in transition planning for students with disabilities. Journal of Special Education, 50(1), 57-67.
  • Lee, Y., et al. (2008). Self-determination and access to the general curriculum. Journal of Special Education, 42(2), 91-107.
  • Shogren, K. A., et al. (2018). Promoting self-determination in young children with disabilities: The critical role of families. Inclusion, 5(1), 28-45.
  • Smith, D., et al. (2021). Enhancing self-determination for young adults with disabilities through assistive technology. Rehabilitation Psychology, 66(1), 1-10.
  • Zhang, L., et al. (2005). Adapting self-determination constructs to diverse cultural contexts. Journal of Disability Policy Studies, 16(1), 13-21.

Navigating Social Isolation: Insights from a Decade of Change


Social isolation refers to the state of being separated from social interactions, relationships, or community involvement. It can be either voluntary or involuntary and may result from various factors such as geographical distance, physical disabilities, mental health issues, cultural barriers, or personal choices. Social isolation can have significant negative effects on an individual’s mental, emotional, and physical well-being, leading to feelings of loneliness, depression, and decreased overall quality of life.

Reflecting on the disruptive months of the pandemic, I am reminded of the importance of nurturing social bonds amidst uncertainty. During those early days, Wendy C. Hildenbrand’s article, “Let’s Start Here: Relationships, Resilience, Relevance,” provided solace, highlighting that during times of personal and professional turmoil, prioritize relationships with family, friends, and acquaintances.

The pandemic highlighted the challenges faced by individuals with disabilities. While our understanding of physical accessibility had been improving, the pandemic exposed deeper issues of social isolation. Research, like Smith & Macdonald’s (2017) study on transportation barriers and their impact on loneliness, showed how physical and social obstacles worsen each other.

Additionally, the concept of ‘double isolation,’ introduced by Green et al. (2019), shed light on the unique challenges faced by individuals with sensory disabilities. This notion underscored how communication barriers compound physical limitations, further isolating individuals and intensifying emotional distress.

Understanding Social Isolation

2013-2020: Pre-Pandemic Insights

Before the pandemic, our collective understanding of the challenges faced by people with disabilities was expanding, though our focus often leaned more towards physical rather than social accessibility. The research during this period illuminated significant barriers contributing to social isolation. For instance, Smith & Macdonald’s (2017) study resonated deeply with me; it shared the story of Anna, a young woman whose restricted access to transportation profoundly deepened her loneliness. This narrative underscored the reality that physical and social barriers often intertwine, each reinforcing the other.

Green et al. (2019) introduced me to the concept of ‘double isolation’ faced by individuals with sensory disabilities. This idea struck a chord, illustrating how communication barriers can layer additional challenges over physical ones, significantly impeding social engagement and deepening emotional distress.

2020-2024: The Pandemic and Its Aftermath

The arrival of COVID-19 drastically transformed our social landscape. Essential public health measures inadvertently intensified isolation for individuals with disabilities by curtailing physical interactions and access to community resources (Brooks et al., 2020). This period also marked a rapid escalation in digital communication adoption, which, while opening new avenues for connection, also unveiled stark digital divides. Those without access to necessary technology found themselves further isolated, an issue poignantly captured in the findings of Taylor & Francis (2022).

Evolving Strategies to Combat Social Isolation

To effectively address these challenges, we needed to thoroughly reevaluate and overhaul our coping and intervention strategies:

  • Enhanced Technological Integration: The pandemic underscored the critical role of technology in bridging the gap between isolation and community participation (Valtorta & Hanratty, 2019). Platforms like Zoom and social media became essential, though they come with challenges, especially for those unfamiliar or unequipped with the latest technologies.
  • Hybrid Community Engagement: We have seen significant advances in community programs, which now blend online and in-person elements. This approach ensures that participation is accessible to everyone, accommodating a broad range of needs and circumstances.
  • Inclusive Design in Public Spaces: There has been a renewed emphasis on designing public spaces that are not only physically accessible but also conducive to fostering social interactions, an essential element for mental health and well-being.

Enhanced Focus on Mental Health Resources

The pandemic also brought to light the necessity of robust mental health support tailored to the unique challenges faced by people with disabilities:

  • Mental Health America (MHA) and The Anxiety and Depression Association of America (ADAA) provide resources that address the heightened anxiety and depression resulting from increased isolation.
  • BetterHelp and Talkspace offer flexible, accessible mental health services that many in the disability community rely on.

Concluding Thoughts

Social isolation is a complex issue that affects individuals across various demographics, including those with disabilities. Pre-pandemic research shed light on the interconnectedness of physical and social barriers, highlighting the profound impact of isolation on mental and emotional well-being. However, the COVID-19 pandemic exacerbated these challenges, intensifying isolation for many and revealing stark digital divides.

Navigating social isolation challenges requires evolving strategies to meet diverse community needs. While enhanced technological integration facilitates connections, ensuring accessibility is vital. Hybrid community engagement models blend online and in-person interactions, fostering inclusive participation. Inclusive design in public spaces promotes social interaction and well-being for all.

Organizations like Mental Health America, The Anxiety and Depression Association of America, and platforms like BetterHelp and Talkspace offer accessible services. An integrated approach addressing physical and social accessibility, alongside tailored mental health support, can combat social isolation and enhance well-being, especially for individuals with disabilities.

References

  • Becker, S., et al. (2018). “Social ties and volunteerism among individuals with disabilities.” Disability and Health Journal.
  • Green, C., et al. (2019). “The effects of community engagement on health outcomes among individuals with disabilities.” Journal of Community Health.
  • Smith, K., & Macdonald, S. (2017). “The impact of social isolation on physical and mental health among individuals with disabilities.” Canadian Journal of Disability Studies.
  • Valtorta, N.K., & Hanratty, B. (2019). “Loneliness, isolation and the health of older adults: do we need a new research agenda?” Journal of the Royal Society of Medicine.
  • Brooks, S.K., et al. (2020). “The psychological impact of quarantine and how to reduce it: rapid review of the evidence.” The Lancet.
  • Jones, P., et al. (2021). “The impact of COVID-19 on high-risk populations: A new focus on individuals with disabilities.” Journal of Health Psychology.
  • Taylor, A., & Francis, L. (2022). “Digital Divide: Accessibility and the Pandemic.” Journal of Disability Policy Studies.

Advancing Inclusion Amidst Persistent Challenges

While there have been noteworthy advances in technology and education that facilitate inclusion, persistent barriers related to social attitudes, economic disparities, and infrastructure continue to impede progress. Long time readers of Wiley’s Walk know that my definition of true inclusion is not merely to be present but to be actively involved, interacting with a diverse mix of individuals from all walks of life. Authentic inclusion involves more than physical presence; it requires social acceptance and breaking down barriers that segregate based on ability.

Social Attitudes

A general lack of understanding about disabilities continues to be a significant barrier. Misconceptions and stereotypes not only persist but also actively hinder the inclusion of people with disabilities. One of the most prevalent misconceptions is that disabilities are always apparent.

In reality, many disabilities are invisible, such as chronic pain, mental health conditions, and certain learning disabilities. This misconception can lead to the dismissal or misunderstanding of individuals’ experiences with these less obvious disabilities.

Another misconception is that a disability defines who a person is entirely. While a disability may influence aspects of someone’s life, it does not encompass their entire identity. People with disabilities have diverse interests, talents, and personalities, just like anyone else.

Some mistakenly believe that accommodations for people with disabilities offer unfair advantages because they don’t fully grasp the diversity of disabilities and the barriers individuals encounter. However, accommodations are actually designed to ensure equal opportunities for participation.

Inclusion involves the complete and equal involvement of individuals with disabilities in social and community activities. However, negative perceptions hinder this process, leading to exclusion, marginalization, and discrimination, which in turn affect individuals’ social interactions and psychological well-being. While progress has been made in changing these perceptions, ongoing dedication and effort are needed for meaningful change (Brown & Thompson, 2023).

Economic and Infrastructural Challenges

Economic disparities continue to undermine inclusion efforts. People with disabilities face higher unemployment rates and inconsistent access to essential healthcare services, which are significant issues (Global Economic Forum, 2024). Additionally, many areas, especially rural and older urban regions, do not have the necessary infrastructure to support full accessibility, which restricts participation in the community (Urban Development Network, 2022).

Current Trends Shaping Inclusion

Advancements in Technology

Technological innovations have played a pivotal role in enhancing inclusion efforts. These technological advancements, especially assistive devices and software, have improved accessibility for people with disabilities including speech and motor impairments like cerebral palsy, multiple sclerosis, and spinal cord injuries. These tools, such as eye-tracking systems and speech-to-text applications, empower individuals by improving communication and mobility. They bridge the gap between ability and access, allowing people with disabilities to actively participate in their community.

Education and Universal Design

The integration of Universal Design for Learning (UDL) is pivotal for fostering inclusive environments, extending its impact beyond the classroom (Educational Policy Institute, 2024). UDL principles advocate for the development of materials, methods, and assessments that cater to diverse learning styles and abilities, not only in educational settings but also in various aspects of life (Educational Policy Institute, 2024).

At its core, UDL acknowledges the diversity among individuals, striving to offer multiple avenues for representation, expression, and engagement (Educational Policy Institute, 2024). By doing so, UDL aims to dismantle barriers and ensure equitable access to opportunities (Educational Policy Institute, 2024).

The application of UDL principles extends beyond education, with workplaces embracing them to foster inclusive environments where all employees can thrive (Educational Policy Institute, 2024). This may involve providing diverse communication channels, flexible work arrangements, and accessible technologies to accommodate different needs and preferences. For instance, a company adopting UDL may offer remote work options and utilize communication tools with built-in accessibility features. This not only enables full participation for employees with disabilities but also cultivates a culture of inclusion and diversity.

Digital and Community Inclusion

The digital transformation, accelerated by the COVID-19 pandemic, has emphasized the necessity of making virtual environments accessible. As digital platforms have become essential for work, education, and socialization, it is crucial to remove barriers and create inclusive environments for people with disabilities. Efforts to implement Web Content Accessibility Guidelines (WCAG) have played a key role in this, making digital spaces more usable for diverse disabilities. This improved accessibility not only enhances user experience but also broadens participation opportunities, allowing individuals with disabilities to fully engage in online activities and access information with greater autonomy and ease (Digital Inclusion Alliance, 2024).

For example, adopting Web Content Accessibility Guidelines (WCAG) standards has led to the development of screen reader-friendly interfaces, captioned videos, and keyboard navigable websites. These changes make online content more accessible to individuals with visual, hearing, and motor impairments.(Digital Inclusion Alliance, 2024).

At the grassroots level, community-driven initiatives are essential for promoting accessibility and inclusion (Community Inclusion Initiative, 2023). Community-driven initiatives refer to projects, activities, or efforts that are initiated, organized, and led by members of a community. Accessible community gardens and inclusive sports programs are examples of efforts to promote physical activity, bring people together, and increase awareness of disability issues (Community Inclusion Initiative, 2023).

These initiatives establish inclusive environments where individuals of all abilities can actively engage. For example, accessible community gardens feature raised beds and tactile signage, enabling people with mobility or visual impairments to participate in gardening activities. Similarly, inclusive sports programs offer adaptive equipment and modified rules, ensuring that individuals of diverse abilities can fully enjoy sports activities together (Community Inclusion Initiative, 2023).

Concluding Thoughts

By creating spaces, activities, and opportunities where individuals of all abilities can participate and thrive, communities not only promote physical well-being but also cultivate a culture of inclusion and equity. These efforts demonstrate a commitment to ensuring equal opportunities for everyone, fostering a sense of belonging.

As we move forward, our challenge is to ensure that inclusion becomes more than just physical access, but a genuine experience for all. Despite making significant progress, our path towards a culture where individuals are valued as people rather than defined by diagnoses continues. True inclusion requires us to redefine participation and equity, ensuring opportunities are accessible to everyone, regardless of abilities.

References

Resource List

Reflecting on Inclusion in 2024 – Navigating Inclusion

120,400+ Diversity People Walking Stock Photos, Pictures ...

Reigniting a Passion for Inclusion

Delving back into Peter Downs’ exploration of the “7 Pillars of Inclusion” alongside Timothy R. Clark’s compelling narrative on choosing inclusion deliberately has reignited my passion for this subject. Their perspectives have not only rejuvenated my interest in blogging but have also strengthened my resolve to explore inclusion in all its facets throughout 2024.

The Evolution of the “7 Pillars of Inclusion”

When I first read the “7 Pillars of Inclusion” developed by Peter Downs, I was struck by how these principles—access, choice, communication, and others—could transform environments to be genuinely inclusive. In 2024, these pillars have taken on new dimensions. We now see them applied not just in recreation and sports but in digital accessibility, inclusive employment, and social media platforms, ensuring that everyone, regardless of ability, can fully participate in the rapidly evolving digital age.

Diversity as a Fact, Inclusion as a Choice

Timothy R. Clark’s phrase, “Diversity is a fact, inclusion is a choice,” resonates even more today. We have witnessed significant technological advancements that facilitate inclusion, yet the choice to implement these innovations remains uneven across sectors. It is a reminder that while technology can enable inclusion, the decision to make environments inclusive still requires intention.

Personal Reflections on Participation and Engagement

The world unfolds differently when you navigate it with a disability—every curb, doorway, and stairway presents a potential obstacle or opportunity, depending on how they are designed. It is these everyday elements, shaped by seemingly small decisions made by individuals and organizations, that can dramatically alter the accessibility of environments.

The Importance of Accessible Design

The principles of accessible design, which aim to create environments that are usable by all individuals, regardless of their abilities or disabilities, have never been more pertinent. Accessible design encompasses various strategies and considerations, from architectural features to digital interfaces, all aimed at removing barriers and promoting inclusion.

There has been notable progress in implementing accessible design in smart city initiatives. Features such as tactile paving and audio signals at pedestrian crossings have been introduced, significantly improving urban living for people with visual impairments. Accessible design plays a crucial role in fostering a more inclusive and equitable society, where everyone can participate fully and independently. As cities grow and technology becomes even more embedded in our lives, ensuring that everyone can navigate both physical and digital spaces is crucial.

Looking Forward

As we move forward, the principles of inclusion should continue to influence our approach to innovation and development. Emphasizing the need for environments that not only meet basic accessibility standards but also aim for universal design is crucial. Such environments should be practical and advantageous for everyone, regardless of their abilities.

To learn More

For those looking to deepen their understanding, here are some initial resources to get you started:

[1] Community Toolbox: Tactics for Modifying Access, Barriers, and Opportunities

[2] Community Toolbox: Ensuring Access for People with Disabilities

References


[1] Play by the Rules: The 7 Pillars of Inclusion

[2] Play by the Rules: The 7 Pillars of Inclusion

[3] Forbes Magazine: Diversity Is A Fact, Inclusion Is A Choice

Exploring Participation and Access as Foundations for Inclusion

I recently read two articles that inspired me enough to return to blogging.

Peter Downs developed a framework to support the inclusion of people with disabilities in sports and recreation called the “7 Pillars of Inclusion” as part of Play by the Rules. [1] The “7 Pillars” extend far beyond inclusive recreation, sports, and physical activity. Key concepts promoted by the pillars include access, choice, and communication. [2]

Timothy R. Clark wrote an article in Forbes Magazine titled “Diversity Is A Fact, Inclusion Is A Choice.”  One of the themes identified in Clark’s article is the idea that ‘innovation is the process of connecting people and connecting things’. [3]

My personal insertion and view is that inclusion is more than bringing ideas and people in. Inclusion is about supporting engagement and participation. Participation is about getting people with multiple disabilities represented, included and involved. People with a variety of disabilities and a range of needs can provide critical input and support to resolve physical, programmatic, and communication barriers that exist and negatively affect programs and service delivery. The foundations of inclusion begin with representation, participation, and access. This piece will touch upon key definitions and examples.

The challenge in trying to espouse and support the foundations of inclusion is that a lot of work remains to debunk myths and misperceptions about people with disabilities. In my own circumstance, people can sometimes “feel sorry” for me or perceive my disability as a personal tragedy or as something that needs to be cured. The reality is that my walking differences do not translate into a lower quality of life.

Integrating the principles of access, choice, and communication as part of inclusion involves examining the physical, programmatic, and communication barriers that exist for people with disabilities. Examples of physical access barriers include having steps without ramp access, lacking automatic or push-button doors, or facing narrow sidewalks, doorways, and aisles.

I suspect many people without disabilities navigate throughout their communities without having to consider the height of stairs and curb cuts.  Most don’t think about the width of hallways. I suspect that most people do not think twice about opening a door to enter or exit a building.  

Physical access in its simplest form means having the ability to get in, out, and around a physical space. Physical access includes elements like accessible routes, ramps, elevators, signage, entrances, restroom accessibility, and parking.  

Programmatic access means that a person with a disability can equally participate in a program or service. [4]  Modifying  procedures or systems to support participation and use of services in the same way as a person without a disability is called an accommodation. Examples of accommodations include providing assistive listening systems, sign language interpretation, and presenting informational materials in braille, audio, and large print formats.

Communication access means that communication is made possible through “auxiliary aids and services” such as sign language interpreters or real-time captioning services, so that people who are deaf, hard-of-hearing, deaf-blind, or speech-impaired can equally participate in programs, services, and activities. [5]   Communication access also covers environmental accessibility. For example, visual fire alarms are one form of communication access. [6]

For the principles of inclusion to be truly recognized and embraced,

  1. People with all types of disabilities must be represented and engaged as active participants and partners for their input and experience to resolve critical access barriers;
  2. Stereotypes and misconceptions about people with disabilities must be evaluated, questioned, and discredited; and
  3. Physical, Programmatic, and Communication access needs to be continually weighed and measured.

Accessibility Resources:

Community Toolbox: “Tactics for Modifying Access, Barriers, and Opportunities”  

https://cutt.ly/GZd70s7

Community Toolbox: “Ensuring Access for People with Disabilities” https://cutt.ly/VZd5zec

Works Cited

[1] https://cutt.ly/mZdNNmT

[2] https://cutt.ly/mZdNNmT

[3] https://cutt.ly/pZdNZvI

[4] https://cutt.ly/iZd00Ln

[5] https://nwadacenter.org/topics/ada-title-ii-state-and-local-government

[6] https://nwadacenter.org/topics/ada-title-ii-state-and-local-government

Resilience: Continuity, Connections, & Adapting

I have read several articles about resilience over the last few months.  Dennis Rensel defines resilience as “continuity and recovery in the face of change”.[1]  In March of 2020 our lives irrevocably changed. Lockdown was imposed to limit the spread of COVID-19.  New York like many other states went into lockdown and “on pause”.  Our daily lives and routines were disrupted. City streets that were typically bustling with people became silent.  Businesses closed. Personally, I only ventured outside to go to my mailbox.  At the start of the Pandemic, I felt like I was living in the frame of a paused movie. 

Continuity is defined as maintaining an uninterrupted state of activity.  As days and then weeks passed after the initial lockdown, I found I maintained continuity by having a schedule and a routine. I woke up at a certain time.  I was fortunate that I could work from home.  I had phone calls to make and assignments to complete. I found myself applying principles from an article I read by Wendy C. Hildenbrand entitled “Let’s Start Here: Relationships, Resilience, Relevance.”  The article offers principles for adapting to change in personal and professional contexts. Ms. Hildenbrad’s article suggests that effective adaption includes developing and preserving social connections and relationships.[2]  Relationships in this context refer to family relationships, friendships, and acquaintances.

I had a list of people that I would contact and connect with on a regular basis. The connections could happen over the phone or over the computer.  I found that a simple ten-minute conversation provided me with a sense of relief, reassurance, and comfort. The topic of conversation was not as important as the connection.  In crises like the Pandemic social connections can help us to navigate through times of uncertainty and through fear of the unknown by offering mutual outlets of support and encouragement.

When the lockdown occurred, the healthy lifestyle I was trying to implement also went on pause.  I lost my resolve to eat healthy and exercise.  I felt a strong sense of apathy and indifference.  I needed time to recover my sense of purpose, focus, and determination. Staying connected to the people closest to me helped me to regain my sense of motivation to pursue my goals again. 

The experience of the Pandemic has brought up feelings of confusion, frustration, loss, and uncertainty.  Many of us are still trying to process the long-term effects and consequences that have resulted from the Pandemic. 

Ms. Hildenbrand’s definition of resilience includes the idea of “Persisting, adapting, and moving forward.”[3]  Resilience is about learning to positively adapt and respond to permanent changes including earth-shattering disaster, illness, separation, and death—but what do the principles resilience look like in practice?

The foundation of effective resilience and coping skills includes allowing for the space and time to process the breadth of changes that have occurred.  It includes developing and implementing positive strategies to take care of the mind and body.  Examples of positive coping strategies include practicing meditation, engaging in some form of exercise, and developing a network of social support.  

Continuity, connections, and relationships are important components of resilience.  There is a final component of resilience that I would like to introduce and emphasize.  Adapting to massive and permanent change means embracing a sense of hope despite facing adversity.  Hope emerges after a time of suffering.[4]  From hope, motivation is born. The combination of hope and motivation will support us to persist in times of doubt and uncertainty.

[1] Rensel, D. J. (2015). Resilience-a concept. Defense A R Journal, 22(3), 294+.

[2] Hildenbrand, W. C. (2019). Let’s Start Here: Relationships, Resilience, Relevance. AJOT: American Journal of Occupational Therapy, 73(6), NA.

[3] Hildenbrand, W. C. (2019). Let’s Start Here: Relationships, Resilience, Relevance. AJOT: American Journal of Occupational Therapy, 73(6), NA.

[4] Subandi, M. A., Achmad, T., Kurniati, H., & Febri, R. (2014). Spirituality, gratitude, hope and post-traumatic growth among the survivors of the 2010 eruption of Mount Merapi in Java, Indonesia. Australasian Journal of Disaster and Trauma Studies, 18(1), 19+

Remembering the Mission: The Why and the Importance of Engaging

Approximately 8 years ago, I participated in a conference where a diverse group of people with disabilities, their family members, and professionals came together for a day to learn from each other. The conference was designed to promote new ways to connect, form a common mission, and engage.

Prior to attending the conference, I wrote an article about the concept of Burnout and the qualities of burnout that professionals and individuals sometimes fail to recognize when it happens. In short, Burnout refers to long-term exhaustion and disengaging from subjects that are important to us. When a person experiences it, it can cause us to pause and question: “Why am I doing this?”

One of the opening exercises at the conference included a go- round where people were asked to name a person or an event that brought them to the disabilities field. Before I responded, I thought about every person, -past and present who has stood and engaged for me and with me. I stand for every child and adult behind me.

When I started in the disability field, I saw attitudes, environments, and systems that I wanted to influence. I wanted to make my community more inclusive and the communities around me more inclusive. Inclusive to me means creating easier access and participation – both within built environments and simultaneously creating full involvement with my peers, both with and without disabilities. I don’t want to just get to the door, I want to get in and engage.

The concept of inclusion has been around for decades and yet many people with disabilities still fight to not only get in, but to also engage. True engagement to me means participating with every person within a given environment.

Change starts when people come together with a new or reignited spark of passion. The sphere of change grows when people take that passion and start to engage. It happens when we start to observe what exists – when we see the programs and the people that are including people with disabilities every day and it’s just a part of everyday practice. The sphere of change continues to grow when we connect with the people who are doing it and ask, “How do I do it?” For successful coalition development, groups of people need to come together with a common goal and engage.

For true inclusion to take root and spread, people need to observe their communities and identify what resources currently exist, gather data, engage, and form nontraditional partnerships between individuals, families, schools, community-based organizations, and businesses to expand what is working.

If you are tired, remember what brought you to the profession. Remember who brought you to the profession, help others that want to not only get in, but actively engage.

The Physician as a Partner: Beyond Rapport to True Collaboration

We’ve all gotten that standard form letter that contains the dreaded line, “your physician will be leaving.” In my case, the recent letter announced that my physiatrist, Dr. A. would be leaving the region marking the end of a multi-year relationship. The unexpected news caused me to stop and reflect on Dr. A’s role in the development of my walking program. What established the positive working alliance between us? When I originally embarked on my journey to walk device- free, I did not know what a Physiatrist was or what a critical role this specialty would play in my progression.

Physiatrists focus on restoring and maintaining optimal body function. They closely supervise and manage the medical complications associated with Cerebral Palsy and other disabilities that impact mobility and muscle movement. They treat acute and chronic pain and musculoskeletal problems such as with the back and neck. Physiatrists diagnose conditions, oversee treatment, therapy, and medications.

My treatment course frequently changed with Dr. A’s guidance. Scores of literature confirm that in order for an effective partnership to be formed, first a rapport has to be established. My relationship with any physician starts out with a sense of wariness.

Did they read my file? Do they know what my issues are? Will they be willing to adopt a progressive approach in the management of my disability? Will they accept and embrace my goals for improved mobility and greater independence?

I will never be a passive patient. I am an active contributor in the decision-making related to my medical care. I work hard to find physicians who will engage and collaborate with me. I want to work with professionals who will actively listen, check my understanding, and endorse inquiry, mutual problem-solving, and decision-making. I want them to have the same goals and for us to come to agreement on the treatment course together. Coming to this desired state of agreement or consensus is not always neat.

When I first met Dr. A., there was not a “getting to know you.” stage. I was in significant pain from musculoskeletal problems in my back. I had only one goal – to make the pain to stop. It did not matter what it took. Dr. A., at my request, took charge and conferred with other professionals I trusted including my Neurologist and Movement Specialists.

She learned about my therapies, and fitness and walking program, and the exercise approaches being used, and built upon efforts already underway. When we discovered that I had three herniated discs in my back, existing exercises were modified under Dr. A’s guidance and pain management strategies were employed.

What I found most impressive was the level of consideration that Dr. A displayed for my observations and opinions. While she certainly took into account the observations of the other professionals working with me, I was always the final decision-maker about what would or would not happen next.

She completely gained my trust and esteem when I discovered that she provided her personal cell phone number to my Movement Specialists, indicating that they could call her with questions or concerns. She also steered me,or those working with me, in another direction if we were not seeing expected results or if she observed well-intentioned efforts were not having positive outcomes.

She also guided me on what information would be helpful to her. The use of video became a critical tool in our work. The video clips showed specific exercise interventions, progressions in time with specific angles and sequences of movement. The video provided visual references that my doctor would not see during short office visits. The video gave Dr. A. a better diagnostic and assessment tool. When I walked in for my appointments, I knew Dr. A. had watched the footage. I knew from the questions she asked and from the movement sequences that she would have me perform.

Dr. A. became and stayed a thoroughly engaged and active partner in my care. Our partnership is a model for others. An effective working alliance is built from “advance planning, gathering information, and building a framework for discussion” between a physician and their patient. This principle is emphasized when a healthcare provider has to relay complex information or “bad news”. [i] Dr. A. knew I did my homework. I would read about all of the treatment options or interventions proposed and she would be ready when I walked in the door to respond to my questions.

Healthcare providers are taught to assess how much a patient knows about their disability or condition. [ii] Dr. A. knew that I knowledgeable about my Spastic Cerebral Palsy. She also knew that I wanted to learn more. One of the best responses a patient can hear from their Healthcare provider is, “I don’t know, but I will research it.” Dr. A. said this to me more than once and then did the research.

A principle emphasized in Healthcare education is supporting next steps and follow-through. [iii] Dr. A. ensured that my Movement Specialists and other professionals working with me had the information and guidance that they needed to implement program or exercise modifications to address challenges I might be experiencing.

The highlighted principles can be applied across numerous Medical, Health, Fitness, and Wellness Disciplines. The two most aptly applied principles to form an effective working alliance are: listening to the client/patient and supporting them. Dr. A. did this in our work. She supported the development of the foundation for positive health outcomes and an effective working alliance; moving beyond rapport to true collaboration.

[i] Communication strategies for difficult physician-patient interactions. Maureen Leahy. AAOS Now. (Apr. 2012) p14.

[ii] Communication strategies for difficult physician-patient interactions. Maureen Leahy. AAOS Now. (Apr. 2012) p14.

[iii] Communication strategies for difficult physician-patient interactions. Maureen Leahy. AAOS Now. (Apr. 2012) p14.

This article was originally published in the “Endless CapABILITIES Blog”, and National Center on Health, Physical Activity and Disability, sponsored by The National Center on Health, Physical Activity and Disability (www.nchpad.org). NCHPAD is part of the UAB/Lakeshore Research Collaborative and supported by Grant/Cooperative Agreement Number U59DD000906 from the Centers for Disease Control and Prevention (CDC).


The Importance of Social Support Following Injury

On November 11, 2015, I sat on a medical exam table waiting for the orthopedic surgeon to return with the results of an MRI. In the span of two months, I went from walking between two and three miles a day to barely being able to walk across a room. The cause of this decline was not clear. The speed of the decline and my lack of physical ability was alarming.

I immediately scheduled an appointment with my primary doctor. I had multiple appointments with different doctors and specialists. I was eventually referred to a neurologist and an orthopedic surgeon. Originally, doctors thought the rapid decline in my walking ability was directly related to my Spastic Cerebral Palsy (CP). A series of neurological tests showed that this condition was not CP-related.

As I sat on the exam table waiting for the MRI results, my mind raced. “What would the tests show?” I was trying to keep my sense of anxiousness under control. The exam room door abruptly opened and Dr. Dixon walked in with the MRI scan.

“What did the scan show?” I asked fearfully. Dr. Dixon’s response made me want to laugh and cry at the same time. “Kerry, you have a broken bone. The pain in your foot has nothing to do with CP.” I felt a simultaneous sense of relief and dread wash over me. The good news was that I did not need surgery. The bad news was that I would spend the next eight weeks in a cast.

I stared intensely at Dr. Dixon and asked “What caused this?” He replied that I had a stress fracture in one of the bones in my right ankle. A stress fracture is a fancy way of saying I had a crack in my ankle bone. Stress fractures are frequently caused by overuse. The exercise program I had worked so hard to master in order to achieve my goal of walking device-free likely contributed to the bone injury. My relentless effort to ascend and descend inclines (Hills) without support may have put excessive pressure on my ankle bones. Dr. Dixon advised me that I should permanently stop aggressive exercises such as hill climbs and descents.

I listened to his expert advice knowing that everything I had been working towards for more than 10 years would now have to change. The future goal of my walking program would shift from walking device-free to consistently improving and maintaining my mobility. I was put in a cast and prohibited from bearing weight on my right leg with the knowledge that my mobility would be restricted over the next eight weeks. I knew I would significantly lose the muscle mass I had worked hard to gain. I also knew that I would lose many of the skills and movement patterns I had worked so hard to attain.

Research clearly documents that participation in exercise and sports increases the chance of suffering an injury. As I watched the cast being applied from the base of my knee to my toes, I realized that I was not at all ready for the recovery process I was facing. I had to be assisted off of the exam table to try to find a new sense of balance with the extra height and weight of the cast. To move, I had to use the strength of my upper body and the poles and drag my foot. Initially I could not stand up with the cast even with the support of my poles.

I understood the causes of injury such as muscle imbalances, overuse, and over-training. What I did not know but learned about throughout this experience was the psychological impact of injury.

Research has shown that when an injury is sustained a person experiences “stress from the activity disruption, a sense of separation and isolation, anger, and irritability.” [1]  Over the eight weeks that I was in the cast, I experienced many combinations of these different emotions. When I broke the bone, I felt restricted. I could not move the way I wanted, or go where I wanted to go. Over the eight week period, I temporarily lost my sense of independence and choice.

Research shows that social reassurance and a support network is critical to the recovery process for an individual or athlete after an injury is sustained. [2] During the eight weeks of recovery, I had family and friends who came to visit regularly and made sure my house was clean and that I had groceries. Family members rotated and rearranged their busy schedules to give me a ride to and from work every day. I was fortunate that I had this committed support to hasten my recovery. However, even with all of this support, I still struggled. I wanted my typical abilities and independence to return faster than it would. Dr. Dixon warned me that my physical recovery would take over three months.

Research shows that a support network including family and friends can help an individual or athlete re-frame and re-evaluate their injury. [3] In my case this meant that people in my support network helped me to remember that my injury was short-term. On those days when I was feeling isolated, anxious, or frustrated, it was helpful for me to hear “Kerry, it is just a broken bone. You will heal.” At the beginning of my recovery, when I heard positive messages such as “the bone will heal”, it reminded me that the injury was indeed short-term. With this positive reassurance, I wallowed less in my feelings of isolation, anger, and irritability.

Social support from my family and friends was also critical at the later stages of recovery. Family members were present at all of my follow up medical appointments. Having people who knew my history and who could reiterate and reinforce my previous level of function was important for doctors who did not know my history. Family members helped me to share factual details with the doctors and also helped me to monitor symptoms, such as swelling, which could impede my recovery.

Research also shows that connecting with a person who has been through a similar injury is helpful. Unfortunately, I did not have connections to people who suffered the same injury. I would have asked “What strategies did you use to get through the injury? How did you handle the mobility restriction? How did you combat the frustration and anxiety?”

I learned many valuable lessons from my injury. One of these lessons is the importance of having a support network. Tell me, Wiley’s Walk readers, who are critical people in your support network? How has your network supported you in a time of injury?

[1] Fernandes, H. M., Reis, V. M., Vilaça-Alves, J., Saavedra, F., Aidar, F. J., & Brustad, R. (2014). Social support and sport injury recovery: An overview of empirical findings and practical implications. Revista De Psicología Del Deporte, 23(2), 445-449.

[2] Fernandes, H. M., Reis, V. M., Vilaça-Alves, J., Saavedra, F., Aidar, F. J., & Brustad, R. (2014). Social support and sport injury recovery: An overview of empirical findings and practical implications. Revista De Psicología Del Deporte, 23(2), 445-449.

[3] Fernandes, H. M., Reis, V. M., Vilaça-Alves, J., Saavedra, F., Aidar, F. J., & Brustad, R. (2014). Social support and sport injury recovery: An overview of empirical findings and practical implications. Revista De Psicología Del Deporte, 23(2), 445-449.

This article was originally published in the “Endless CapABILITIES Blog”, and National Center on Health, Physical Activity and Disability, sponsored by The National Center on Health, Physical Activity and Disability (www.nchpad.org). NCHPAD is part of the UAB/Lakeshore Research Collaborative and supported by Grant/Cooperative Agreement Number U59DD000906 from the Centers for Disease Control and Prevention (CDC).

The Knee Injury

Typically, where I live, there is a flurry of activity. There is a steady stream of people and traffic. Everything is in motion. In February, I was a part of that flurry of activity.  I went to work, I went to the gym, I had plans with friends… Then, one Saturday, I work up and had severe pain in my knee.  My right knee buckled.  I struggled to stand and walk.  The pain was severe enough that I knew I needed to see a doctor.

I scheduled a ride with Uber and went to the local Urgent Care that had an orthopedic clinic.  As I waited for my name to be called, I mentally prepared myself for the conversations that would take place with the medical staff.  I had never seen medical professionals in this practice. I had copies of the medical notes from recent visits to my primary care doctor with me to verify the past orthopedic issues from Spastic Cerebral Palsy.

My name was called and I limped down a long corridor.  The trekking poles that typically make my walking faster and easier, were hindering me now.  It hurt to walk.  When I entered the exam room, the nurse asked me to get up on the exam table.  I explained that I could not get onto the table because the table was too high and that I could not bend my knees or lift my legs high enough to get up on the table.  I knew if I made the attempt, it would jar my injured knee too much. I explained that I was in a lot of pain.  The nurse then asked on a scale of 1 to 10, what may pain level was.  I answered a 7.5.

She took my vitals and reviewed the medical records I provided.  There were discrepancies between the electronic record on her computer and the paper files that I supplied.  The nurse worked with me to correct the inaccurate information.  Errors included a list of incorrect medications.  For some reason medicine I no longer take remained in the electronic record.  The lesson:

– Always ask for a summary of every medical visit and share relevant information with new doctors and their medical staff.
– Ask for a copy of x-rays, and related test results, and
– Always share a list of current medications.

A Physician’s Assistant (PA) came to see me next.  The PA verified my medical history and said that I needed an x-ray of my knee.  I had to walk down another long hallway to get the x-rays taken.  The PA returned and showed me the test results.  The only thing the x-rays showed were signs of arthritis.  Due to my pain level, the PA thought I had a meniscus tear. Meniscus is a piece of cartilage in the knee that cushions and stabilizes the knee joint.  Signs of a tear include pain and swelling.  The PA was concerned that due to surgery I had on my hamstrings, the scar tissue could be hiding a potential blood clot.

The PA wanted to send me to another orthopedic clinic that was over 30 minutes away to have another set of tests done to see if I had a blood clot.  I explained that I did not drive.  I asked if there was a closer office or facility to get the testing done.

The PA asked me to call a family member or a friend who could give me a ride. I explained that I was not able to reach anyone; it was a Saturday after all.  I explained that my closest family members were over two hours away.  The PA scowled and said the only other option was the Emergency Room (E.R.).  I said I would take an Uber to the Emergency Room.  The PA did not appear to understand the challenges of not driving or the logistics transportation alternatives require.

I have not been to the local E.R. in a long time.  The triage nurse saw me limp in through the automatic doors.  The nurse got a wheelchair and had me sit down.   After completing the required medical forms, I waited to be assessed by the next set of medical professionals.

Time seemed to slow down.  I caught myself looking at the time approximately every ten minutes.  I tried to call a couple of local friends while I waited.  I could not reach them.  I did not know if I could walk out of the E.R. alone after the tests.  My knee really hurt.

A doctor approached me and said anti-inflammatory medication had been ordered to help alleviate the pain in my knee.   Another nurse came with a gurney.  I maneuvered myself from the wheelchair to the gurney.  The nurse wheeled the stretcher down several long hallways.  I ended up in a room with an ultrasound machine.  The ultrasound would be used to see if I had a blood clot in my knee and leg veins.

A technician performed the tests and I had to wait for the results.  While I waited, I tried calling family and friends again.  I could not reach anyone.  My anxiety increased.  More time passed and all of my calls to people rolled to voicemail.  I finally reached my brother who lives over two hours away. When he answered the phone, I felt a surge of relief.  He would drive up if I needed help.

The technician returned.  The test results showed that I did not have a blood clot.  I was fitted with a brace called an immobilizer.  The brace wraps around the leg from the mid-thigh to the ankle.  It has metal rods that go down both sides of the brace to immobilize the knee and limit movement.  I needed to find out if I could stand and walk with the new brace.   I asked the nurse to hand me my trekking poles.   My hands were sweaty from nerves.  I took the poles from the nurse. I thought:

“I need to be able to walk out of the Emergency Room.  I need to be able to walk to get to the Uber car.  I need to be able to walk to get into my house.”

I tentatively stepped.  I felt almost giddy when I realized I could move and walk around despite the extra  weight of the new brace on my leg.  The nurse had me walk down another stretch of hallway to ensure that I could safely maneuver and walk.  After several minutes and several steps, we both seemed satisfied that I could walk with the injury and manage.  I received my discharge papers and strict instructions that I should stay off the knee as much as possible.

I was to follow up with an orthopedic specialist in three weeks.  I questioned the time-frame.  Three weeks?  The nurse confirmed the three-week time-frame was correct.  I asked whether there were any earlier appointments.  The nurse indicated that I had received the earliest appointment available.  I walked toward the exit of the Emergency Room feeling somewhat deflated.  Three weeks is a long time to wait, especially with an injury. 

I made my way to the parking area for Uber cars and waited my ride.  I began to mentally plan for what I would need to change over the next three weeks.

“I can do this.” I thought. “I can do this.”

I did not realize at the time that my journey with this injury was far from over.