Braille Monitor               January 2024

(back) (contents) (next)

Full Participation of the Disabled in America: Nothing without Us

by Andrés Gallegos

From the Editor: We are sorry to report that Andrés Gallegos died on December 1, 2023. This is most unfortunate, but his passing lends extra weight to his remarks.

Here is what President Riccobono said to introduce this presentation: We're very honored to have the chair with us of the National Council on Disability. The National Council on Disability is an independent federal agency charged with advising the president, Congress, and other federal agencies on all aspects of disability in the United States. Since 2021, Andrés Gallegos has been the leader for NCD. He serves as chairman, and that gives him a lot of responsibility for directing the work that is done by this agency. His background is in the law where he has been recognized widely as a leader in disability rights. He's published widely, trying to advance the ideals that people with disabilities are full participants in society and have the right to live in the world. Unfortunately, he was not able to be with us in person, but we are very happy that he is joining us virtually for the first time at this convention. Please welcome Andrés Gallegos.

Good afternoon. I am Andrés Gallegos, chairman of the National Council on Disability. In case you are not familiar with the council, we are a very small federal independent agency whose statutory mission is to advise the president, his administration, Congress, and federal agencies on all policy matters affecting all people with disabilities in our country and in our territories. I am a member of the disability community, class of 1996, having sustained a spinal cord injury resulting in quadriplegia. What a privilege to address the National Federation of the Blind and its attendees of its national convention on topics of profound importance that directly touch upon your lives.

On July 26, we will celebrate the thirty-third anniversary of our civil rights legislation—legislation that promised full participation of all of us into every aspect of American society. Over the past three decades, we’ve seen a surge in accessible public and private spaces, an increase in reasonable accommodations in the workplace, improved access to public services, and a shift toward a more inclusive societal mindset. Indeed, the landscape of our society has been dramatically altered and improved by the provisions and protections offered by the ADA.

However, as we all know, our journey toward complete inclusivity and equality is far from complete. We have considerable work to do. One need only step outside the National Federation of the Blind’s beautiful facilities in Baltimore and attempt to utilize the city’s sidewalks to know that work still needs to be done. But the work that is truly needed is to empower each other to assert our civil rights collectively to hold to account those that are holding us back, to address ablest policies and practices wherever they arise, all to get closer to a society where individuals are not defined by their disabilities. The National Council on Disability, the federal voice of people with disabilities, in our advisory capacity, works tirelessly to do just that—to push us closer to a time where our day-to-day life is not dictated by the challenges society imposes but by the immense potential that lies within us, to a time where accessibility is not a privilege or reluctantly viewed as an unfunded mandated obligation but recognized for what it is—a fundamental right; where the sound of a medical device speaking out your results is as ordinary as the chirping of birds in the morning or the rustling of leaves in the wind; where navigating websites is as effortless as finding your way around your home, a place you know by heart; where your paycheck is reflective of your talents, your skills, your dedication, and not your ability to see. Our work extends beyond that, as we push closer to a time where being a person with a disability does not serve as a barrier but instead opens doors to greater opportunities; where entrepreneurship and business leadership are reachable for people with disabilities. This is the promise of the ADA that we have yet to realize.

We live in a time where technological innovations and medical breakthroughs can be made in weeks or months, where it once took years. These innovations and breakthroughs have dramatically improved the quality of life for countless individuals around the globe. Yet, it’s imperative that we let our federal and business leaders know that the effectiveness of any technological or medical innovation depends largely on its accessibility and inclusivity. For the over thirty-two million adults in America who report “having trouble” seeing, even when wearing glasses or contact lenses, or who are blind or unable to see at all, the need for accessible medical devices has never been more critical.

Medical devices, including home medical devices, such as glucose meters, blood-pressure monitors, thermometers, insulin pumps, home dialysis machines, weight scales, heart rate monitors, among other devices, have revolutionized the way we manage our health. They have transferred power from the hands of healthcare professionals into the hands of individuals, enabling us to monitor our well-being right from the comfort of our homes. But those who design those devices don’t know what happens when those hands that seek to monitor their health can’t see the readings on a device or what happens when a medical device isn’t designed with inclusivity in mind, leaving those who are blind or have low vision unable to utilize them effectively. The answer is simple yet stark—exclusion, disempowerment, and an increased risk of health complications.

Blindness and low vision should not preclude anyone from accessing the tools they need to maintain good health. When we talk about accessible healthcare, it’s more than just making sure that there is a ramp for me and those like me, or sign language interpreters for the deaf. It is about ensuring that the tools we create are usable by all, regardless of their physical condition or situation. For those who are blind and with low vision, this means designing medical devices with tactile buttons, large embossed markings, voice output capabilities or Braille compatibility. It means rethinking our design process and creating devices that do not rely solely on visual cues but also incorporate auditory and tactile feedback. It means having members of our community at the table during the design process. Nothing without us.

In February 2022, we released our framework to end health disparities of people with disabilities. Designed as a blueprint for our federal leaders to address the decades-long significant health disparities that persist between us and our nondisabled counterparts. One of its forty-three components calls upon the Food and Drug Administration, through administrative action, to establish regulations requiring that intermediate and high-risk medical devices with a digital interface provide a blind or low vision user access to the same services and information and generally the same ease of use, as provided to a user who is not low vision or blind. Over the past year, our main focus has been on working with our federal partners to move towards the implementation of our five core components—enhanced data capturing; designation of all people with disabilities as a health disparity population; designation of all people with disabilities as a special medically underserved population; the adoption of enforceable standards for accessible medical diagnostic equipment; and funding for the development of model disability clinical-care competency curricula and training. We are focusing now on moving forward the balance of the framework’s components, including engaging the FDA to address accessible home medical devices.

If we are in fact committed to addressing health disparities between us and our nondisabled counterparts, we must also ensure that we are able to participate in clinical trials. This is a matter of justice, equality, and scientific validity. We have historically been underrepresented in clinical trials, leaving a significant gap in our understanding of how treatments and interventions work for us. From a justice and equality perspective, we, like anyone else, have a right to participate in clinical research.

Participation provides early access to innovative therapies that could potentially benefit others in the same community. It is therefore crucial that clinical trials are designed and conducted in ways that are inclusive and accessible for people with disabilities. From a scientific standpoint, our exclusion can lead to skewed results. Without representation from our community, we cannot ascertain the safety and efficacy of treatments for us. This lack of data may lead to unexpected ineffectual treatments or missed opportunities for effective interventions.

I am pleased to share with you that we are in the process of developing a policy report addressing the need for inclusion of people with disabilities in clinical trials. About one third of clinical trials in the United States use eligibility criteria that excludes individuals with intellectual disabilities and cognitive disabilities. And approximately two thirds of clinical trials have specific exclusionary eligibility criteria, excluding individuals who may not be able to read or write, those requiring assistance with activities of daily living, those who do not have access to technology or who, in the view of the research teams, do not have the ability to complete study procedures, safely engage in the research, or have the necessary health status.

A study published in Health Affairs last year analyzed ninety-seven interventional protocols in four clinical trials relating to dementia, depression, diabetes, and lung cancer. It revealed that 85 percent of those protocols allowed broad investigator discretion to determine eligibility, and only 18 percent explicitly permitted us to participate. Visual disability was stated as exclusionary criteria in 34 percent of those protocols.

According to the Center for Disease Control and Prevention, people with vision loss are more likely to report depression, diabetes, hearing impairment, stroke, falls, cognitive decline, and premature death. Clinical trials evaluating therapeutics and interventions to address those conditions must include people who are blind or with low vision. And while the report is not yet completed, you can be sure that one recommendation will be that federal funds should not support clinical trials that exclude people with disabilities without evidentiary-based scientific rationale. We have to stop permitting federal funds to be used to discriminate against us—period, full stop.

The principle of inclusion extends far beyond healthcare. The empowerment of individuals with disabilities does not stop at equitable health care, but continues through ensuring equitable opportunities in business and work as well. Thus, we shift now our focus from the laboratory to the realm of entrepreneurship and employment—exploring avenues where inclusivity, once again, plays a defining role. This brings us to discussion of the SBA’s Section 8(a) program and the pressing need to eliminate subminimum wage—both are critical areas where we need to foster greater inclusion and equality for people with disabilities.

If you are not familiar with the SBA’s Section 8(a) program, it is a federal initiative designed to support and empower small businesses owned by socially and economically disadvantaged individuals. That program aims to level the playing field by providing these businesses with a range of benefits for federal sole-source contracts, competitive set-aside contracts, and mentor-protégé programs, among others. It provides technical assistance, training, and management guidance. A key feature of the program is its “presumption of eligibility” for certain groups, enabling faster and more efficient processing of applications. It embodies the federal government’s commitment to diversity and inclusion in the business sector. Recognizing a vibrant diverse business community contributes significantly to the economic health and growth of our nation. Inclusion of people with disabilities as a presumed eligible population under this program will mark a significant step toward entrepreneurial opportunities for our community.

Pursuant to SBA’s regulations, a business is eligible for the 8(a) business development program if they are, inter alia, at least 51 percent owned and controlled by United States citizens who are (and I quote) “socially disadvantaged individuals who have been subjected to racial or ethnic prejudice or cultural bias within American society because of their identities as members of groups and without regard to their individual qualities.” The program thus presumes that Black Americans, Hispanic Americans, and Asian-Pacific Americans are socially disadvantaged and presumptively eligible for the program.

There is a significant body of literature evidencing that people with disabilities are also socially disadvantaged. We achieve lower rates of education, employment, and financial independence. We live in poverty at more than twice the rate of people without disabilities (29 percent compared to 12 percent). We make up approximately 12 percent of the US working-age population. However, we account for more than half of those living in long-term poverty; 17.5 percent of us participate in the workforce, compared to 65 percent of people without disabilities, directly resulting in higher rates of poverty.

Now, if an individual is not a member of one of the presumed socially disadvantaged groups, it does not preclude them from eligibility in the program. However, absent the presumption of eligibility, each applicant must “present facts and evidence that by themselves establish they have suffered social disadvantage that has negatively impacted their entry into or advancement in the business world.” And each instance of alleged discriminatory conduct must be accompanied by a negative impact on the individual’s entry into or advancement in the business world, in order for it to constitute an instance of social disadvantage.

The National Council on Disability believes that this is an unduly significant burden to place on each disabled entrepreneur, and given the stark evidence that people with disabilities are economically and socially disadvantaged, we should be included as a presumed eligible group. To that end, in May of last year I wrote to SBA Administrator Isabella Guzman to address that very issue. Since then, we’ve had a couple of extended meetings with the SBA’s associate administrator and his leadership team, the most recent of which occurred this past May. I wish I could announce that there’s been progress, but I cannot. There’s resistance to our categorical inclusion. The SBA’s encouraging us to submit a formal application for inclusion, which we (the National Council on Disability) cannot as an advisory body. And therefore, we look to engage in conversation with the National Federation of the Blind on this issue very soon.

While we push for categorical inclusion in the SBA 8(a) program, the National Council on Disability continues to advise our federal partners to eliminate subminimum wages that are legally permitted under the Federal Labor Standards Act, Section 14(c). Established in 1938, Section 14(c) allows eligible businesses to pay some people with disabilities less than the federal minimum wage. That was 1938. It is now eighty-five years later. Through an amendment in 1986, the wage floor was eliminated by Congress. Elimination of the wage floor has resulted in some employees with disabilities earning as little as pennies per hour, quite often earning that little, while the employer was making hundreds of thousands of dollars, and in some instances, millions of dollars from that labor. That should no longer be tolerated. It is a matter of basic fairness and equity. We should receive the same wage for the same work as those without disabilities. We have bills to pay, dreams to pursue, lives to lead. We deserve the dignity that comes with earning a fair wage. Subminimum wages reinforce harmful stereotypes that we are less capable or less valuable as workers. This is contrary to the fact that, with the right supports and accommodations, we can and do perform our jobs as effectively as, or better than, our counterparts without disabilities. With the payment of subminimum wages, employers are disincentivized from investing in accommodations that can help us to work more independently and productively. Therefore, eliminating subminimum wage is a key step towards economic equality for people with disabilities.

In closing, let us be reminded of the strength and resilience that lie within our shared vision—a vision of a time where medical devices speak to all who need them, not just those who can see; a time where the process of scientific and clinical trials does not discriminate, but includes every one of us, valuing our unique experiences and contributions; a time where no individual’s paycheck is diminished due to their visual abilities, and where entrepreneurship is not the exclusive domain of any one group, but is open and accessible to all, including people with disabilities.

Each of these goals are not disparate goals. They are interconnected pieces of the same vision—a vision of a society that truly sees all its members; that truly values each one of us; and that truly fulfills the federal promise that was made to us thirty-three years ago; a promise of full participation in a society that understands—nothing without us. Thank you again for this opportunity to address you.

(back) (contents) (next)

Media Share