by, Renee Wood
For a while now the AI that I use, copilot, which I call Cope, has been suggesting I write a blog on my concept about “perceived freedom”. It says that in the disability world it’s real, but not too many non-disabled people understand it.
Perceive freedom is one of the primary reasons people with disabilities who have the cognitive ability to understand what’s really going on, are afraid to go into institutions. Many non-disabled who see very significantly physically disabled people struggling to get their needs met in the community, can not fathom why we wouldn’t want to be in a place that would totally care for our needs (on their time schedule and under their rules – not ours). When we speak to them about it is because we will lose our “freedom” of control, to do what we want, to make our own decisions, to be the boss — it rightly mystifies them. All they can see is what we are not getting. Yes, there are times we go without in our own home in the community, but it’s still out of our choice in a sense, because we know we can go into an institution if we want. But going without sometimes is a small sacrifice for the perception of freedom.
So what exactly is the perception of freedom? How many non-disabled people have laid in bed at night and longed to get up to get a sandwich? They are perfectly capable of getting up and getting that sandwich if they want, but they don’t. It’s just the idea that they “can” (the perceived freedom) and no one will stand in their way, make them fill out 20 pages of prior authorization to get that sandwich at night.
For us disabled, if there’s no one there at night to get us that sandwich, it’s just knowing that we have the right to have it without any guff from someone in authority over us that gives us a sense of freedom and independence. And if we do have someone there at night in our own home, they are gonna make us that sandwich and bring it to us just because we asked. It’s not about whether we get it, or not because of some obstacle pertaining to our own body. It’s about knowing we can have it without begging someone to allow us to have that sandwich.
There are three aspects to freedom that many non disabled people conflate into one – the freedom of action.
1. The freedom of action is to carry out one’s own choice even with help. For example, if I want to go to the mall I might have to find a driver or take public transportation, but I don’t have to wait until Saturday when everyone from the institution is going.
2. The Freedom of Desire. The ability of wanting something without seeking permission. Like the example of the sandwich. I can want that sandwich in my own home without asking permission to get it. I may get it faster in the institution, but I still have to be granted permission to have it. It is not my baloney, it is not my bread it is not my mayonase or refrigerator. Therefore I need to ask permission to have it. In my own home it is mine – I can have it and I know – I may not have anyone to make it for me at the moment, but I don’t have to seek permission. I just have to find someone to make it.
3. The freedom of decision. The ability to make my own decisions without having them be evaluated by someone over me, whether it’s appropriate, necessary or harmful.
If I decide to go canoeing with friends, no one will evaluate whether this decision will be harmful for a 67 year old with cerebral palsy who has osteoporosis. That is my decision to evaluate the risk and the harm and to take precautions to make it as safe as possible.
Even though non-disabled people collapse these three types of freedom into one — the freedom of action — disabled people live them separately every day. That is why institutions are so suffocating and feel like being imprisoned for nothing you’ve done wrong except being disabled. Although we might get our basic needs met in an institution, we have to sacrifice something vitally important to the human race – our overall freedom.
Permission vs. Freedom
Most people think freedom is the physical ability to do something. But perceived freedom is different — it’s the right to do something, even if you can’t physically carry it out yourself. It’s a psychological state, and for disabled people it means everything. The physical part matters far less than the knowledge that no one has the authority over you to stop you by subverting your rights, the ordinary every day rights that every non-disabled person has.. If you need help, you can ask someone who is willing to assist you because “you decided” you want it — not because they’re granting permission. And even if you can’t get that help at the exact moment you want it, you still know you have the right to that bologna sandwich at midnight without needing anyone’s approval.
The Psychological Cost of Being Under Authority
Even in the most perfect institution, where staff are kind and pleasant, a disabled person’s soul slowly dies. Many non‑disabled people don’t realize this because they believe our lives consist of “care” — showering, dressing, getting medical needs met, eating, and getting enough rest. But that’s just existence. Life consists of more than that.
One instinctively becomes aware of the power dynamic in an institution — it is always present. Every request becomes a negotiation, every need becomes a transaction, and every part of daily life is filtered through someone else’s rules, schedules, and priorities. In your own home, a request is a right. In an institution, a request is a plea.
A simple request for a shower because you had an accident on a day that is not your “assigned” shower day becomes a negotiation. You start to feel like you’ve done something wrong by asking. You disrupted their sacred schedule. Guilt sets in. Shame follows. You begin to apologize for needing basic human care.
Over time, this constant loss of control takes a deep psychological toll. People become anxious because they never know when their needs will be met. They become depressed because their choices no longer matter. They grow hopeless because their days are dictated by routines they did not choose. They lose the sense that their life has meaning because they are no longer the author of their own decisions.
Under these conditions, one starts to lose their personhood, their value, and their identity. Nothing has meaning anymore. And if they still dream, they know those dreams will never come true in this environment. They won’t have a real lover, a family, or a job that means anything to them. They become emotionally homeless. And if these issues are even recognized, they are either medicated or dismissed as “part of the disability,” rather than symptoms of an environment that destroys mental health.
This erosion of autonomy is not theoretical — it is measurable. Decades of research show that people living in institutions experience higher rates of depression, anxiety, despondency, and social withdrawal. Many die younger, not because of their disability, but because the chronic stress of being under authority damages the mind, the immune system, and the will to live.
The human psyche is not built to live under constant permission. A life with no avenue to pursue purpose or meaning slowly dismantles the sense of self. Freedom is not a luxury. It is a psychological necessity. Without it, people do not simply suffer; they decline.
The Illusion of Safety
Some non‑disabled people honestly believe their loved one will be safer and better cared for in an institution. This illusion could not be further from the truth.
Institutions do not necessarily make vulnerable people safer — they make their families feel safer. Many truly believe their loved one receives 24‑hour care. In reality, most residents receive only two to two‑and‑a‑half hours of actual hands‑on care per day, and that’s only for those with the highest needs. What institutions provide is 24‑hour surveillance — and surveillance is not care.
And today, the same monitoring technologies used in institutions can be set up in a person’s home. When used in the community, these tools become “supports” rather than mechanisms of control. This is because the disabled person still maintains control over their environment. They still have the final say over everything that goes on in their home. No one else has taken over their choices, their schedule or their dreams. That’s the major difference between support and control.
Safety is not about control. Non‑disabled people are often led to believe that the more controlled an environment is, the safer their loved one will be. In truth, the more control a disabled person has over their own life, the safer they are. Institutions are controlled, confined environments that routinely cover up mistakes, medication errors, neglect, physical abuse, unwanted sexual encounters, and other harms. Add the mental health decline and the higher rates of early death, and the idea that institutions are “safer” becomes absurd.
If you truly believe an institution is safer than a person’s own home in the community, I have some swamp land I’d be happy to sell you. Because that’s exactly what institutions are selling — swamp land to the desperate and uninformed.
Perceived Freedom Is Still Freedom
Perceived freedom is actual freedom. It’s about freedom of the mind. Freedom over your own life. Freedom to know you have the right to do what everyone else has the right to do — to live the life you want.
Even non-disabled people can’t always do what they want, but at least they know they have the right to try. No one is standing in their way saying that they can’t. There might be other reasons such as financial, family ties or they’re just not ready yet, but no institution is standing directly in their way and saying they can’t get the job they desire, go to college or have a family. And if society is preventing a minority group from achieving these goals – it’s often called discrimination and oppression.
These can have the same detrimental effects as living in an institution. Although discrimination and oppression are highly frustrating and unfair, discrimination does not take over one’s abode usually. In other words, it doesn’t actually enter into your personal space. It might psychologically affect you in that personal space, but usually no one comes into your home and dictates daily rules, schedules and policies you have to live by in that environment – one still has the final say in what goes on in that space – unless you’re disabled and in an institution.
It is true that disabled people may need some extra support to achieve these things such as finding work, getting married, and assistance with daily needs in the community, but in the institution they have very little say and these things just would not happen
Perceived freedom is often misunderstood by non‑disabled people because they think freedom only counts when you can physically carry out the action yourself. And if one physically or mentally can’t achieve daily tasks themselves, the non disabled people believe that person also loses his authority to say what happens in their life, or make any final decisions in what happens in their life. But perceived freedom is still freedom — because freedom is not measured by muscle strength, mobility, or physical ability. Freedom is measured by “who has the final say” over your life — the authority to navigate one’s life. That reality is contrary to the institutional life of today.
A disabled person may not be able to get out of bed at midnight to make a sandwich, but they still have the right to “want” that sandwich, “decide” they want it, and “ask” for it without needing permission. The physical act may require assistance, but the authority over the act belongs to them. That authority — the final say — is the essence of freedom.
Perceived freedom means you own your decisions even when someone else provides the hands. It means you can say “yes” because you want something, not because someone else approves it. And just as importantly, it means you can say “no” — no, I don’t want to get up; no, I don’t want that meal; no, I don’t want to participate; no, I don’t want to follow your schedule. In an institution, “no” is often treated as defiance, noncompliance, or a behavior problem. In your own home, “no” is simply a choice.
This is why perceived freedom is still freedom. It preserves the core of personhood: the ability to direct your own life, even when you need help to carry it out. It protects your identity, your preferences, your boundaries, your desires, and your dignity. It ensures that your life is still “yours”, even when your body requires assistance.
Freedom is not the act.
Freedom is the authority over the act.
And perceived freedom protects that authority.
Four Walls Does Not Create An Institution — Power does
People often assume that an institution is defined by its size, its building, or the number of disabled people living inside it. But four walls do not make an institution. What happens “within” those walls is what determines whether a place is an institution or a home.
An institution is created when the people who live inside those walls do “not” hold the power. When decisions about daily life — meals, schedules, visitors, activities, privacy, relationships, and personal choices — are made by others, the space becomes institutional, no matter how small, clean, or modern it looks.
The real question is always: “Who has the final say?” Do the residents govern their own lives? Do they make decisions about their routines, their relationships, their future? Do they control the environment they live in?
Or are those decisions made by people who do not live there, who do not share the life experience of the residents, and who hold authority over them simply because they are disabled?
A group of disabled people living together by choice is “not“ an institution — as long as they are in charge of the residence. As long as they set the rules, make the decisions, and direct their own lives, the space remains a home.
But that is not the reality of current institutions. In today’s system, disabled people rarely hold authority over their own environment. Their lives are governed by staff, administrators, policies, and schedules created by people who do not live there and who often have no understanding of what it means to be disabled.
Conclusion
Perceived freedom is not a metaphor, a comfort, or a sentimental idea. It is the foundation of human life. It is the quiet knowledge that your choices belong to you, your desires belong to you, your boundaries belong to you, and your future belongs to you. It is the understanding that your life is still “yours”, even when your body requires assistance.
Institutions do not take away disability — they take away authority. They replace self‑direction with compliance, autonomy with permission, and personhood with routine. They offer care without freedom, safety without dignity, and survival without meaning. And for disabled people, that trade is devastating.
Freedom is not measured by how much a person can do with their body. Freedom is measured by who has the final say over their life. In the community, disabled people may need support, but they still hold that authority. In institutions, that authority is stripped away and handed to people who do not live there, do not share the experience of disability, and do not bear the consequences of the decisions they make.
Four walls do not create an institution. Power does. And when disabled people lose power over their own lives, the space becomes an institution — even if it looks like a home from the outside.
Perceived freedom is still freedom. It is the psychological oxygen that allows a person to dream, to hope, to plan, to love, to grow, and to live. Without it, people do not simply suffer; they fade. They decline. They disappear.
If we want disabled people to thrive, we must stop confusing care with control, safety with surveillance, and institutions with homes. We must recognize that freedom — real freedom, perceived freedom, the freedom of the final say — is not optional. It is the essence of being human.
