Sheelagh Semper, PhD

Learning and Development / Instructional Design

Topics:

Participation Is Designed: Support, Access, and a Misfiring Brain

Finishing a PhD after acquired brain injury was not a story of individual grit. It depended on people, accommodations, accessible learning practices, familiar tools, and routines that made continued participation possible.

The first two posts in this series focused on learning to work with an unreliable memory and on designing research from lived experience. Neither story is complete without talking about supports in place along the way.

When I was working on my PhD, I often encountered articles discussing the contribution of resilience and grit on successful completion. At the time I joked that it was spite, not grit, that drove me towards my end goal. For me, finishing my PhD after acquired brain injury was not a story of individual grit. It was a story of systems: people who gave me space to think, institutional arrangements that sometimes made participation possible, familiar tools that helped me remember, and routines that held when my memory did not.

For disabled students and researchers, support is often described as something extra. In my experience, it was part of the structure. Without it, there would have been no thesis to complete.

The people who helped me think

My supervisory team at Lancaster University provided intellectual challenge, practical guidance, and the patience required for a process made up of many small steps. I often describe their impact through a progression in my own development: Dr. Sue Cranmer taught me to crawl, Ms. Joanne Wood taught me to walk, and Dr. Jan McArthur taught me to fly.

They did more than review drafts. They gave me space to talk through ideas, which mattered because processing does not always happen silently or neatly. Sometimes I needed to rattle on for a while before I could clearly articulate what I had learned along the way.

When meetings were held through university virtual-meeting accounts, access to AI-generated transcription files reduced the cognitive load of note-taking. I could focus more fully on the conversation, then return to the transcript later to check what I had heard and understood.

Dr. Doug Reid, a long-time mentor and friend, offered another kind of support. His regular question, “So what?”, pushed me to keep one eye on practical value and not disappear entirely into the thesis.

Cohort 11 mattered too. Distance study can be isolating at the best of times. Add disability, fatigue, pain, and recovery to that, and isolation grows quickly. Humour, care, and shared experience made a difference.

Support beyond the university

Academic work does not happen in isolation from the rest of life. The practical labour of keeping a household running can be the first thing that collapses when energy disappears.

My sister, Roseanne, helped with regular domestic support, including caring for my fur-kids when I was buried in data or library work. My parents, Bill and Bridget Cumming, offered the kind of steady belief that matters more than people sometimes realize. My mother led the cheering section, while the memory of my late father’s confidence in me kept nudging me forward.

My partner, Drew Semper, carried more than I can easily put into a sentence. While I was dealing with fatigue, migraines, slowed processing, and the rest of the crip tax, he took on cooking, cleaning, encouragement, and the everyday labour that gave me space to recover and continue.

That is not a sentimental footnote to an academic story. It is part of the real infrastructure that made the work possible.

An accommodation plan is a beginning

Formal support through the Lancaster University Disability Office was foundational. It resulted in an Inclusive Learning and Support Plan, or ILSP, that included due-date flexibility and support related to transcription and recorded learning activities.

Those supports were not special treatment. They were a practical response to the fact that reading, processing, remembering, and participating after brain injury often take longer than one might assume.

An accommodation plan on paper does not remove barriers on its own. I still had to self-advocate when recordings or transcription were not enabled for live seminars. That work came with a temporal and emotional cost: explaining the need, waiting for a response, correcting misunderstandings, and deciding whether I had the energy to push the issue further.

My research found a similar pattern for other students with acquired brain injuries. The availability of recordings, captions, clear instructions, consistent course-site design, and flexible assessment could make a meaningful difference. When these were absent, students had to spend more of their own limited energy trying to work around the system (Semper, 2025).

Tools as infrastructure

Some of my most important supports were ordinary tools used deliberately. My handwritten research journal became an external memory system. Microsoft Excel gave me a familiar way to organize literature, data, codes, and decisions. Google Calendar became less a schedule than a second brain.

I used multiple reminders: by week, by day, and by hour. I tracked time to compare how long I thought a task would take with how long it actually took. Over time, that helped me develop schedules that reflected my changed pace rather than the pace I remembered from before my injury.

Environmental choices mattered too. Light sensitivity, visual fatigue, headaches, and difficulty processing information on a screen can turn seemingly ordinary technology into a barrier. Coloured filters, screen adjustments, familiar software, breaks, and the ability to work in a controlled physical environment were all part of keeping the work possible.

These were not signs that I was less capable. They were the practical supports that allowed me to use the capacity I had.

Online learning as access

For me, online learning was not simply convenient. It provided me with access to higher education.

Asynchronous learning gave me control over pace. I could pause, reread, revisit a recording, or return to a task after a seizure, migraine, or bad brain day. Working from home gave me more control over lighting, noise, physical comfort, and access to rest when I needed it.

That flexibility did not make learning effortless. It reduced some barriers that a conventional classroom-based approach had intensified. The ability to access content in multiple formats and work at a manageable pace gave me a way to remain connected to learning when my brain was not always predictable.

For other students with acquired brain injuries, the same features can matter: recordings, transcripts, readable documents, familiar navigation, flexible pacing, and alternatives to a one-size-fits-all assessment format (Semper, 2025).

Meeting myself where I was

The most difficult support system to build was internal. I had to learn to meet myself where I was at instead of measuring every day against the person I had been before my injury.

That meant accepting crip time: a reality in which symptoms, recovery, and capacity do not always follow a tidy schedule (Blanchard, 2020). It meant recognizing that a task taking longer did not make it less valuable, and that rest was not the opposite of progress.

I used to think needing this much support meant I was less capable. Now I understand that support is part of how meaningful work gets done.

Participation is designed

Accessibility is often framed as a private adjustment made for an individual after something has gone wrong. That framing puts the burden on disabled people to disclose, explain, request, follow up, and keep asking.

Universal Design for Learning offers a different direction. By building in multiple ways to access information, engage with learning, and demonstrate knowledge, institutions can reduce some of the barriers that force students to negotiate access one exception at a time (CAST, 2024).

This does not mean every person will need the same support, or that a single design can meet every need. It means planning for human variation from the start: use clear written instructions, offer materials in usable formats, enable captions and recordings where appropriate, build consistent course spaces, and create more than one path to participation.

Disabled students should not have to become expert self-advocates just to access an education. The goal should not be to teach people how to endure barriers more quietly. It should be to design fewer barriers in the first place.

Participation is designed. So is exclusion. We have choices about which one we build.

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