The View From a Different Place
About a year ago, receiving an advocacy award from New York State’s Chief Disability Officer brought an unexpected moment of recognition. The award also honored, posthumously, Denise DiNoto, a remarkable advocate whose dedication to people with disabilities continues to be remembered.
Certain details from that day remain especially vivid. There were nerves, of course, but also familiar faces and the encouragement of colleagues and friends who had gathered to share the occasion. Among that wonderful group of people were Mom and Dad, whose presence meant more than the recognition itself.
They had seen firsthand the years of work and the setbacks that had shaped the journey. They understood the decisions that had been made along the way, including those that had required considerable thought and effort. Having them there was especially meaningful because their encouragement and support had contributed to so much of what the award represented.
The occasion offered an opportunity to reflect on a longstanding commitment to disability advocacy and the relationships developed through years of professional work. It also deepened my appreciation for the people whose experiences had influenced that work and shaped my understanding of meaningful inclusion. A year later, the recognition remains humbling. The months since have brought unexpected changes in my own circumstances, prompting further reflection on the adjustments and support that make participation possible.
In May 2026, ulnar nerve transposition surgery was intended to address an existing medical problem. After an initial period of improvement, complications brought renewed weakness and a loss of function in my hand and arm. These changes disrupted familiar ways of managing daily responsibilities, many developed over more than five decades of living with cerebral palsy. Those years had provided an understanding of what worked, when adjustments were needed, and where guidance could make a difference. Some approaches emerged through experience. Others grew from relationships with people who recognized that there was often more than one way to accomplish something
The complications following surgery brought a different kind of challenge. For years, certain ways of doing things had worked well. Suddenly, some of them no longer did. Familiar activities became more difficult, and new approaches were needed. Living with cerebral palsy had taught the importance of adapting, but this was a reminder that finding another way is not always easy or immediate.
For someone already living with a disability, those changes may affect abilities that have been essential to managing existing limitations. The response requires more than relying on experience alone. It may involve learning new techniques, seeking additional guidance, or reconsidering expectations that have developed over many years.
These changes can be unsettling because the process of adjustment begins before the eventual outcome is known. Experience provides a foundation, but it cannot eliminate uncertainty. Having lived with a disability for many years does not mean that every new situation will be familiar or that answers will be immediately apparent.
The months following surgery brought additional medical appointments and questions about recovery. Rehabilitation has not yet begun because of delays. Referrals have required follow-up, and some recommendations have needed further discussion. Finding the right guidance has taken time. Living with cerebral palsy adds considerations that need to be understood alongside the complications from surgery. Having professionals who listen and take the time to understand the situation has been important. There are still unanswered questions about recovery, and the uncertainty makes it difficult to know what to expect or how best to plan ahead.
Progress has not always followed the course initially expected. Some changes have required adjustments to familiar routines, while others have raised questions that the available medical information has not yet answered. At times, approaches that worked reliably in the past are no longer effective, and suitable alternatives have not been identified. Previous experience with disability provides a practical understanding of adapting to changing circumstances, but it does not necessarily make new limitations easier to manage or the loss of previously established abilities less disappointing.
These experiences do not always lead to a broader lesson or a positive outcome. Some difficulties remain unresolved, requiring further adjustments without a clear understanding of what may change. Although the current medical concerns are different from those encountered in the past, the process of assessing limitations, considering alternatives, and making adjustments is familiar. What remains uncertain is how much function may return and which changes may become necessary over time.
Much of my professional work has centered on understanding how people access services, the challenges they encounter, and how their needs may change over time. This has included identifying barriers, improving access to information, and helping individuals make informed decisions about the services and support available to them. Over the past year, some of these concerns have become more personal. Familiarity with systems and procedures can be helpful, although understanding how something works does not necessarily make it easier to navigate when personal circumstances are involved.
The past year has also brought to mind lessons learned during childhood. Growing up, Mom and Dad encouraged me to recognize that difficulties could be approached in different ways and that the first option was not always the only one worth considering. Their familiar advice was that when a mountain stood in the way, it might be possible to climb it, go around it, or find a way through. The point was never that every obstacle could be overcome or that every situation had a satisfactory solution. Instead, it was about considering the available choices, recognizing what might or might not work, and understanding that circumstances sometimes called for a different approach.
Mom and Dad never suggested that determination alone would solve every problem. Sometimes the first approach didn’t work, and another had to be considered. There were occasions when help was needed or plans had to change. Their encouragement made it possible to explore those options without assuming that a disability had already determined the outcome.
Over time, these experiences influenced a commitment to advocacy that extended beyond personal circumstances. Growing up with people who were willing to consider different approaches rather than assume something could not be done helped shape an understanding of what was possible. It also raised questions about those who had not been given the same opportunities.
What happens when someone is discouraged from trying because an activity appears too difficult? How often are decisions made about a person’s abilities without considering whether another approach might work? And how many opportunities are missed because the possibility of doing something differently is never seriously explored?
These questions have remained relevant throughout years of advocacy. They reflect an understanding that opportunities are shaped not only by what a person can do, but also by the expectations of others and the choices available to them. Sometimes, the difference is as simple as having someone listen, ask a question, or consider an approach that had previously been overlooked.
The complications following surgery have brought a different perspective to these questions. After decades of learning what worked and developing ways to accomplish things, much of that knowledge had become familiar and reliable. The changes in physical function have made some of those approaches less effective, requiring adjustments that have not always been easy. Activities that could once be managed using familiar methods may now take more time, involve assistance, or require reconsidering how they can be done.
The adjustment has involved more than finding different ways to accomplish familiar tasks. After years of understanding what worked and how to manage responsibilities, it can be difficult to recognize that some approaches are no longer effective. Needing assistance introduces another change, particularly when there has been little reason to rely on it before. Finding another way to accomplish something may help, but it does not always lessen the frustration of losing abilities that had been relied upon for years.
These changes have also brought renewed attention to the distinction between doing something independently and having a say in how it is done. Assistance may be necessary, but the ability to make decisions, express preferences, and participate in determining what works remains important.
These changes have also brought a greater awareness of how easily assumptions can develop, including our own. After years of knowing what works, it can be difficult to accept that some things may need to be done differently. Yet changes in physical ability do not take away the knowledge, judgment, or experience gained over time. Needing assistance may change how responsibilities are carried out, but it does not diminish the ability to make decisions or contribute in meaningful ways.
In many respects, this brings me back to the recognition received a year ago and the people who have been part of that journey. The occasion was meaningful not simply because of the award, but because it reflected years of relationships, shared experiences, and work that had never been accomplished alone. Family members had offered encouragement and support, while colleagues and fellow advocates had contributed their knowledge, challenged assumptions, and helped open doors for others.
Denise DiNoto’s posthumous recognition was especially meaningful that day. Her commitment to people with disabilities was evident in the relationships she developed and the work she carried forward. Remembering Denise also brought attention to those whose contributions may never receive public acknowledgment but whose efforts have made a difference in the lives of others.
The past several months have reinforced something that has been central to years of advocacy. Circumstances change, and approaches that once worked may no longer be effective. Having the opportunity to make decisions, ask for assistance, and consider alternatives matters just as much now as it did during childhood. The difference is that some of those questions, once considered primarily through professional work, have become part of personal experience again.
Individual experiences have always informed disability advocacy, but meaningful progress also depends on how others respond to those experiences. The challenges a person encounters are not determined by ability alone. Expectations, access to appropriate assistance, and the willingness to reconsider established approaches can influence which opportunities are available and whether people can participate fully.
An approach that works for one person may not work for another, and something that was manageable for years may become difficult when circumstances change. This is one reason advocacy cannot rest on assumptions about what people should be able to do. It requires attention to their experiences, an understanding of the barriers they encounter, and a willingness to consider what might work differently. The same principles apply whether someone is discovering what is possible for the first time or reconsidering methods that have served them well for decades.
A year ago, the recognition offered an opportunity to reflect on years of advocacy and the people who had contributed to that work. The months since have brought unexpected changes, some of which remain unresolved. There are still questions about recovery and adjustments that may be necessary. Knowing from experience that another approach may be possible does not necessarily make finding one any easier, particularly when familiar methods have worked for decades.
The commitment to advocacy does not depend on circumstances remaining the same. The experiences of the past several months have given greater personal significance to principles that have guided the work for years. Not every difficulty has a solution, and not every adjustment will be successful. What remains important is having the opportunity to consider alternatives, make informed choices, and receive assistance when it is needed. Those considerations have shaped the work from the beginning, and changing circumstances have not diminished their importance.
The hills may be different, and the approach may need to change. The reasons for continuing the work remain.
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