By Kylie Morin, Guest Blogger
Northeast Independent Living Program (NILP) drew a group of medical, mental health, and business professionals to their disability awareness training, which touched on the changing language of disability, the different ways that the healthcare system supports those with disabilities, laws and regulations such as the Americans with Disabilities Act, the necessity of self-advocacy for people with disabilities, and other important topics.
The language of disability changes over time, said Sheila Hegarty of NILP. She emphasized the importance of listening to the language that individuals with disabilities use to describe themselves, which alerts nondisabled individuals to what language they can use. She further explained that some young people are now choosing to use identity-first language, referring to themselves as “disabled,” which can represent a sense of empowerment or pride for some people who feel that their disabilities are a part of who they are.
Hegarty also noted that there is a concern in the disability community that some medical and mental health professionals may not receive the support they need in order to effectively treat and respond to people with various disabilities, which can potentially lead to individuals receiving incorrect diagnoses or treatments. As a woman with TAR syndrome, she explained that she did not have her blood pressure taken for five years while on the birth control pill, as attending nurses had not been trained on how to take her blood pressure using her leg.
The training also covered the Americans with Disabilities Act (ADA), which protects people with disabilities from discrimination in employment, social services, and healthcare, among other public venues and services. Although the ADA has made great strides in advancing the rights of individuals with disabilities, Jim Lyons of NILP acknowledged that a business can legally be “in compliance” with the ADA while still failing to meet the individual needs of people with disabilities. He noted that the ADA is complaint-driven, and said that self-advocates can make their needs known and drive change through the grievance process.
Hegarty also noted, however, that self-advocacy can be a struggle for some individuals, who may not have learned how to advocate for themselves. She emphasized the importance of teaching and developing this skill in these individuals, as well as educating both self-advocates and professionals about this issue so that they can be prepared to help address it.
I am a student at UMass Lowell who is currently interning at CLASS and writing a blog series, “CLASSified.” I also happen to be on the autism spectrum! The May 22 NILP training was sensitive and thorough in its approach to disability and, my favorite part, it was led by individuals who had disabilities themselves!
NILP’s Disability Awareness training will next be offered on June 26, 2019. I highly recommend it for all medical, mental health, and business professionals.
Understanding Invisible Disabilities and the Importance of Universal Design
Hegarty also addressed the often-overlooked reality of invisible disabilities, which include conditions such as chronic pain, diabetes, learning disabilities, mental health conditions, and autoimmune disorders. Because these disabilities are not immediately apparent, individuals may face skepticism or a lack of appropriate accommodations in both healthcare and workplace settings. The training emphasized that assuming ability based on appearance can create significant barriers, and that respectful communication begins with not making judgments about what a person can or cannot do.
The concept of universal design was presented as a practical framework for reducing these barriers before they arise. Rather than retrofitting spaces, products, or services after a problem occurs, universal design encourages environments that are usable by all people to the greatest extent possible. Examples discussed included automatic doors, clear signage with both text and symbols, adjustable examination tables in medical offices, and digital documents that are accessible to screen readers. NILP facilitators stressed that universal design benefits everyone, not just people with disabilities, and that small changes in layout, lighting, and communication can dramatically improve access.
Advocacy and Self-Determination in Healthcare Settings
A central theme of the training was the shift from a medical model of disability, which focuses on diagnosis and limitation, to a social model and independent living philosophy that emphasize choice, control, and self-determination. Hegarty encouraged medical and mental health professionals to recognize their patients with disabilities as the experts on their own bodies and lived experiences. Instead of making unilateral decisions about treatment, providers were urged to ask open-ended questions, listen actively, and collaborate on care plans that respect the person's autonomy.
Self-advocacy tools were also reviewed, including the right to request reasonable accommodations under the Americans with Disabilities Act, the value of bringing a support person to appointments, and strategies for documenting interactions when communication breaks down. The training underscored that people with disabilities are not passive recipients of care but active participants who have the right to refuse treatment, seek second opinions, and access their own medical records. Building these advocacy skills was framed as essential not only for patients but also for family members and direct support professionals who may need to assist without overriding the person's own voice.
Employment, Disclosure, and Workplace Accommodations
The training dedicated significant time to the topic of employment, noting that people with disabilities remain underrepresented in the workforce despite strong legal protections. Participants learned about the decision to disclose a disability to an employer, a choice that is deeply personal and often depends on workplace culture, the nature of the disability, and the specific accommodations needed. Hegarty explained that disclosure is not required unless an accommodation is being requested, and that maintaining privacy about a disability is a right, not a form of deception.
Common workplace accommodations were discussed in concrete terms, including:
- Flexible schedules or remote work options for people with chronic fatigue or medical appointments.
- Assistive technology such as screen readers, voice recognition software, or ergonomic keyboards.
- Physical modifications like accessible parking, adjustable desks, or quiet workspaces.
- Clear, written instructions or extra time for training for individuals with cognitive or learning disabilities.
Business professionals in attendance were reminded that accommodations are often low-cost or no-cost, and that an inclusive workplace improves retention, morale, and overall productivity. NILP also highlighted resources such as the Job Accommodation Network and state vocational rehabilitation services as free supports for both employers and employees.
Transportation, Community Access, and the Independent Living Philosophy
A final area of focus was the critical role of accessible transportation in enabling community participation. Without reliable ways to get to medical appointments, grocery stores, workplaces, and social events, people with disabilities often face isolation and reduced quality of life. The training reviewed public transit options, paratransit services, and the need for ride-sharing companies to provide wheelchair-accessible vehicles. Hegarty noted that transportation barriers are frequently cited as the number-one obstacle to independent living in the Merrimack Valley and beyond.
The independent living philosophy, which guides all of NILP's work, was explained as a belief that people with disabilities have the same rights and responsibilities as everyone else, including the right to live in the community rather than in institutions. This philosophy rejects the idea that people with disabilities need to be “taken care of” in segregated settings and instead supports peer mentoring, skills training, and advocacy that enables people to direct their own services and make their own life choices. The training closed with a call to action for attendees to examine their own practices, question assumptions, and work toward a community where all members can fully participate.