The Insidious Disability Privilege Problem
It’s time to talk about the disability privilege problem —- and I’m ashamed to admit I am part of it.
if you look at our disability systems … they deeply screwed up for everybody, but the level of which they are screwed up for those were not privileged is a quantum leap, more challenging than for those who have advantages.
Let’s walk through this—starting with special education.
📚 Special Education: Safeguards Only for the Few
The U.S. special education system is rooted in procedural safeguards. At every IEP (Individualized Education Program) meeting, parents will receive yet another copies of these procedural safeguards (HINT HINT).
But these “Safeguards” really only work for those families who have the privilege to be able to work the system—families with time, energy, and understanding of how education and IEPs operate. You have the time to learn all the procedures. understand the education system at your school, how the special education system at your school works with (and around) the general education system, understand the curriculum, and understand the implications of your child’s specific IEP and how it relates to everything else.
That tiny burden is put entirely on the parents
They may trumpet these safeguards—but unless you can use them effectively. your child has no protection.
My snarky line:
The title says it all “Procedural Safeguards” – the procedures are protected, not the educational needs of your child.
The system doesn’t have to be this way, and in fact if we look at other US civil rights law, it doesn’t work like this at all in other civil rights protections for women for minority groups.
The burden is on the system and the entities involved to comply, not on the individual to enforce and force protection
When other rights are violated, you can go to court for relief. But in special education, you face administrative judges—and have to prove whether procedures were properly followed.
It is a “Due Process” standard, not a “Best educational needs of the child” standard” and that is a HUGE difference.
You don’t go to an administrative judge to determine if the business or government has followed the procedures to protect women or to protect minority ethnic group.
The burden flows the other way this is totally opposite for the way Disability Rights laws are wired.
🏡 Disability Services – Battling Administrative Burden
Moving on to other systems—let’s talk about disability services.
In the U.S., we have three major service models: Institutional Services (formally Long Term Care and Support Services), Home and Community-Based Services (HCBS), and Self-Determination.
Institutional Services are just what they sound like – services provided “in bulk” by the government or through a dedicated contractor.
HCBS are more localized services, in the community, and typically selected by the disabled individual or caregiver from a qualified vendor list (though that list can sometimes be very short).
Self-Determination may sound like a new concept—but it’s nearly three decades old. The disabled individual or their trustee can select what services the individual gets and who they get them from within a budget and broad scope of the disabled person’s best interest.
More control by the individual both controls costs better and provides better services… yet, in order to access these services, the individual must fight through more and more administrative hurdles.
Institutional care is still the default—and in many states, waiting lists for better and more autonomous services are long. If you look around the US you’ll see the long waiting lists for HCBS particularly in Texas and Florida
Even here in California, where self-determination exists, it’s treated as a privilege—not a right. That’s simply unjust. Think about it – the notion that you have control over your own services considered a privilege.
As it is you have to jump through a bunch of hoops hours of training after you beg your case worker to even let you in the program. All of these pieces required time and effort on on the part of the individual and their family or their family.
Why isn’t self-determination the way all the services for all disabled people work by default?
Why not home and community based services by default?
Both disability discrimination and the financial power of the large disability service providers are the easy answer, but hard to change.
💰 Disability Finance: Nice if you can afford it
I’ve written about special needs financial tools: ABLE accounts, asset protections, and benefit-preserving strategies.
But look around —most Americans don’t have a lot of savings. These tools may be meaningless to them. The median US household’s net worth is around $190,000, but given the costs of supporting a disabled person, it is likely that median for families with disabled members is likely notably lower (the average out of pocket expenses associated with autism average $5000 to $7000 per year)
For too many, our basic system is all that’s available—and it’s a system of “Poverty by Design”… and also one of “Don’t Tell, Don’t Ask”… where the services that are available are left to those who can best play bureaucratic Hide & Seek… once again, those privileged with time and money.
If you’re wealthy, savvy, or privileged, you can push the system and work the rules—but that’s not the way things should operate. where if you’re wealthy enough or have time enough or clever enough, you can work them to protect it’s backwards
Disability shouldn’t mean a broken system—especially for those without privilege. being disabled doesn’t have to be a system that is inherently broken and mostly so for those who don’t have privilege.
⚖️ ADA Enforcement: Reactive, Not Proactive
Finally, let’s talk about the Americans with Disabilities Act (ADA). Compliance is based on reaction to individual action, not constructive institutional enforcement.
Even now, businesses and conservative groups are challenging the ADA, framing ADA lawsuits as extorting money from poor businesses (even though the law is 35 years old and there are tax incentives to support compliance).
ADA wasn’t built to ensure accessibility—it only gives people the right to fight for it.
And even that depends on having privilege—legal knowledge, time, and influence.
It’s a reactive system that only works for those seen as credible threats.
That’s not sustainable justice.
🔚 Final Thoughts: Choice, Not Accident
People will complain that our “systems are broken”… but that is not the case.
Nothing is passive.
Nothing is inevitable.
Everything is a choice and those choices can be revisited.
When we look closely at our disability systems, they are designed to divide “Us from Us” – dividing disabled people by diagnosis. Providing system that appear to provide balance compensation that only work for the few.
If fewer than 2% of eligible people are using ABLE accounts… maybe disabled people are being rational. Maybe that is a problem with the law and system, not some failure of marketing.
We can choose to play a different and better game where “all means all” and we won’t allow our community to be divided from itself.
