Who Should The Decision Makers Be?
Across every sector of society—health, education, government relations, social affairs, and beyond—we continue to witness a troubling and persistent pattern: decisions about persons with disabilities are far too often made without the meaningful involvement of those whose lives are most affected. Despite lofty statements about “inclusion,” “engagement,” and “representation,” many entities still operate under a paternalistic model that sidelines the very people they claim to advocate for.
This is not a subtle oversight.
It is a blatant offense—a continuation of historical practices in which persons with disabilities are treated as passive recipients of care, rather than as equal partners and experts in their own lived experience.
Agencies and organizations that exist for persons with disabilities are, ironically, among the most frequent offenders. They frequently assert that they “engage with disabled communities” or “consult persons with disabilities” while, in practice, decisions are predetermined, input is filtered or ignored, and advisory roles are treated as symbolic rather than substantive. Disability representation becomes a checkbox, not a cornerstone.
If we truly want progress, we must confront a fundamental question:
Who should the decision makers be?
- Persons with Disabilities Must Lead—Not Advise
Consultation is not enough. People with disabilities must hold leadership roles, voting power, and authority in decision-making bodies. Their perspectives are not “special interests”—they are central interests. Nothing about us without us must become more than a slogan; it must be a standard.
- Agencies Must Shift from “For” to “With”
Organizations serving persons with disabilities must evaluate whether they are empowering or overshadowing the very community they claim to serve. Boards, committees, and senior leadership must include people with disabilities in significant numbers—not as tokens, but as equals. Structural change is necessary, not optional.
- Accountability Must Be Non-Negotiable
If an entity claims to speak for persons with disabilities, it must demonstrate:
How people with disabilities were involved
How their input shaped the final decision
What changes were made based on feedback
Why any suggestions were not adopted
Without transparency, “engagement” is little more than performative advocacy.
- Create Spaces for Authentic, Accessible Participation
Meaningful engagement requires:
Accessible meeting formats
Paid participation (not volunteer labor)
Multiple communication channels
Support for diverse forms of expression
Recognition of intersectional identities and experiences
Participation should never be a privilege—it should be a right.
- Shift the Cultural Mindset
Perhaps the most profound barrier is not structural but cultural: the belief—implicit or explicit—that persons with disabilities cannot or should not hold decision-making authority. Dismantling this mindset requires public education, policy changes, and a willingness to challenge deeply rooted biases.
- Invest in Leadership Development
Empowerment is not created merely by offering seats at the table; it is supported by training, mentorship, and capacity-building opportunities for disabled leaders. The community has the insight and capability—society must provide the platform.
Reversing the Trend
We reverse this trend only by making a bold, non-negotiable shift:
Decisions that affect the lives of persons with disabilities must be made by persons with disabilities.
Not spoken for.
Not represented by proxies.
Not consulted after decisions have already been drafted.
Real progress will begin the moment we stop asking whether persons with disabilities should be decision makers and start acknowledging that they already are—and always have been—the experts on their own lives.
What remains is for institutions, agencies, and society at large to finally recognize, respect, and institutionalize that truth.
I’d like to leave you with this for your consideration.
This editorial explores the question of who truly deserves a seat at the table when important choices are made—whether in government, business, or community life. It examines the balance between expertise and representation, the role of lived experience, and the potential pitfalls of leaving decisions to only a select few. Ultimately, it challenges readers to consider what makes a decision maker legitimate, accountable, and aligned with the needs of the people affected by their choices.
Image = A close-up of two miniature figurines of businessmen standing on a white notebook page with black spiral binding, featuring hand-drawn dotted lines and arrows. One figurine wears sunglasses and holds a white cane, symbolizing blindness, while the other stands nearby observing the path, representing guidance or decision-making.
To learn more about me as an award winning sight loss coach and advocate visit http://www.donnajodhan.com