Disabled does not mean someone’s life is over.

It means the world has to stop pretending access is optional.

I still have a life to live.

That is the part people keep missing.

Disabled does not mean done. Disabled does not mean useless. Disabled does not mean my life is over, my dreams are over, my contributions are over, or the only thing left for me is to disappear quietly into some facility so the rest of society does not have to think about me anymore.

I am disabled. I am also a writer. I am a photographer. I am a human being. I have survived things that would have broken a lot of people permanently, and somehow I am still here, still trying, still creating, still wanting to contribute to the world.

I just need help getting there.

That should not be a radical statement.

But in this country, needing help is treated like a moral failure. Needing food assistance is treated like laziness. Needing disability benefits is treated like suspicion. Needing healthcare is treated like an inconvenience. Needing transportation is treated like wanting a luxury. Needing accommodations is treated like asking for special treatment instead of asking for access.

And I am so tired of it.

I am tired of people saying, “If it was really important to you, you would travel anywhere. You would spend any amount of money. You would do whatever it takes.”

Yes. If I had unlimited money, unlimited energy, reliable transportation, no disability limitations, no insurance barriers, no pain, no cognitive issues, no housing instability, and no survival math to do every single day, you bet your sweet ass I would.

But I live in the same world most people do. A world where access costs money. A world where healthcare depends on insurance networks. A world where transportation depends on whether you have a working vehicle, usable public transit, physical stamina, and enough money to get where you need to go. A world where disabled people are expected to fight through systems that are exhausting even for able-bodied people.

Importance does not create access. Desperation does not create resources. Needing something badly enough does not magically make it affordable.

That is privilege talking.

And I am tired of privilege disguising itself as advice.

I am also tired of the way people look at suffering and immediately search for a reason to blame the person suffering. If a disabled person cannot complete a task, they must not be trying hard enough. If a poor person cannot afford food, they must be irresponsible. If an unemployed person cannot find work, they must be lazy. If a trans person exists openly, suddenly people feel entitled to talk about them like they are a disease, a threat, a joke, a criminal, or something disposable.

That is not just ignorance. That is dehumanization.

I have seen people look at a trans person and respond with cruelty before they respond with humanity. I have seen people talk like certain human beings deserve to live in holes, be shipped away, be locked up, or die. I am sick of hearing it. I am sick of people acting like hatred is an opinion and empathy is weakness.

This country is not doing well.

And no, I do not mean that as some vague dramatic statement. I mean that people are drowning while politicians argue, while systems break, while billion-dollar numbers get thrown around like Monopoly money, and while ordinary people are expected to survive on scraps and gratitude.

The federal poverty guideline for one person in the 48 contiguous states and D.C. is $15,960 a year in 2026. That number is so detached from actual rent, food, transportation, medical costs, disability costs, and basic survival that it feels almost fictional.

SNAP is treated like some generous handout, but the maximum benefit for a one-person household in the 48 states and D.C. is $298 a month for FY 2026. Try buying a month of food on that. Try doing it when grocery prices keep climbing, when dietary needs exist, when disability affects cooking, when transportation affects where you can shop, and when $100 can disappear in one grocery trip.

And then there is the benefits cliff.

You lose your job, so you need unemployment. But unemployment is not enough to survive. Oregon’s unemployment insurance weekly benefit amounts are listed at a minimum of $204 and a maximum of $872 as of July 1, 2025. That may sound like something until rent, utilities, gas, medication, phone, car insurance, appointments, and food all come knocking at once.

Then unemployment can count as income for SNAP. So you can be in this absurd position where unemployment is not enough to survive on, but it can still be enough to reduce or cut off food assistance.

That is not a safety net. That is a maze with a ration pack at the entrance.

And people still say, “Just get a job.”

You cannot “just get a job” anymore. The job market is not some magical open door where anyone who wants work can simply walk in and get hired. People apply to dozens, hundreds, sometimes thousands of jobs and get ghosted by automated systems. People are screened out before a human ever reads their application. People are told they are overqualified, underqualified, too disabled, too complicated, too expensive, too risky, too far away, too much of something.

That is not “nobody wants to work.”

That is a labor market that leaves people behind and then blames them for being left behind.

And unemployment itself is not a vacation. Managing benefits can become a full-time job. Weekly claims. Work-search requirements. Documentation. Phone calls. Letters. Delays. Confusing portals. Long hold times. Fear that one wrong answer, one missed notice, one late response, one technical issue, or one misunderstood requirement will cut you off.

Now add disability.

Now add pain.

Now add cognitive issues.

Now add anxiety.

Now add concussion recovery, word-finding problems, processing delays, fatigue, ADHD, trauma, and the physical exhaustion of simply existing in a body that does not cooperate.

People say “just make the call” like a phone call is one simple task. For me, it is not.

A phone call can mean sitting in a queue while hold music drains me and my anxiety spikes because I am waiting for someone to suddenly pick up. It means processing speech in real time, understanding context quickly, responding on the spot, and trying not to miss anything important. Text gives me time. Text lets me process what was said, think through my response, choose accurate words, and make sure I am saying what I actually mean.

Phone calls do not give me that.

When I pause, I get, “Ma’am, are you still there?”

Yes. I am still here. I am disabled. I am thinking. I am trying to answer correctly because one wrong answer can affect my healthcare, benefits, medication, equipment, housing, food, transportation, or survival.

And that is one task.

That is the part people never understand. It is never just one task. It is one task inside a mountain of tasks.

Medical calls. Insurance calls. Pharmacy calls. Disability paperwork. SNAP paperwork. Housing searches. Appointment scheduling. Transportation planning. Symptom tracking. Records requests. Appeals. Messages. Forms. Follow-ups. Deadlines. Bills. Groceries. Dishes. Laundry. Hygiene. Pain management. Rest. Recovery. Trying to keep my life from collapsing while my body and brain are already overloaded.

Every task costs something.

If I handle the insurance problem today, the pharmacy problem may get pushed back. If I deal with SNAP, the medical message may wait. If I go to an appointment, I may lose the rest of the day or several days recovering. If I make the call, my brain may be fried afterward and nothing else gets done. If I delay the wrong thing, benefits, care, medication, equipment, food, housing, or transportation can be put at risk.

That is not procrastination.

That is triage.

And triage itself is work. Constantly deciding which fire has to be handled first is exhausting for anyone. For someone with cognitive load limits, concussion history, chronic pain, fatigue, and mental health strain, organizing the survival list can become painful before the actual tasks even begin.

I am a complex medical case. I have multiple conditions happening at once. Some overlap. Some interact. Some stand alone. Many affect my pain, mobility, energy, cognition, processing speed, emotional regulation, and ability to handle stress.

And that is just the medical field.

That does not include trying to survive in the world. Trying to find housing. Trying to find transportation. Trying to replace or supplement a high-mileage car so we are not one breakdown away from crisis. Trying to keep up with benefits. Trying to manage healthcare. Trying to live.

It is too much for one person.

Especially one disabled person.

And then people say, “Why don’t you just go live in assisted living or a care home?”

First of all, I am 43. Thank you.

Second, assisted living is not free. If it were free and easy to access, homeless disabled people would not be homeless. Medically fragile people would not be falling through the cracks. People would not be begging online for mobility equipment, housing, caregivers, transportation, and basic dignity.

Medicaid-covered long-term care has eligibility requirements, assessments, income rules, service criteria, openings, paperwork, and limitations. That is not “just go live somewhere.” That is bureaucracy.

Private-pay assisted living can cost thousands of dollars a month. In many places, it is more than most people make in a year.

So when someone says, “Why don’t you just go to a care home?” what they are really saying is, “Why don’t you access an expensive, limited, eligibility-gated system I have not researched, do not understand, and assume exists because it makes me uncomfortable to admit you are trapped?”

I do not need to be warehoused.

I need access.

I need support.

I need accommodations.

I need transportation.

I need a vehicle, and ideally an accessible vehicle, because I still have a life to live.

A vehicle is not a luxury for me. It is access to appointments. Access to prescriptions. Access to groceries. Access to photography. Access to community. Access to independence. Access to the parts of myself that still want to create, contribute, help, and exist outside the walls of survival.

Disabled people are not asking for too much when we ask for the tools that let us live.

And imagine if this country understood that.

In parts of England and the UK, eligible disabled people can access free or discounted public transportation. Some transit systems treat disability access as a public responsibility instead of a private luxury. Some buses and trains have fold-up seating, priority spaces, and stronger expectations that people make room for wheelchair users, elderly riders, pregnant riders, and disabled passengers.

It is not perfect. No system is. But the principle matters: transportation access should be treated like a public good.

In the U.S., too often, disabled access is treated like a bare minimum legal burden. A bus might have one or two wheelchair spaces, and after that, disabled people are expected to figure it out. Public transit may technically exist but still be unusable because of distance, scheduling, terrain, service areas, physical barriers, unreliable paratransit, or the simple fact that someone cannot safely get to the stop.

The legal floor should not be the moral ceiling.

What if we did better?

What if disabled people could ride transit free? What if paratransit was reliable, respectful, and available beyond narrow service zones? What if accessible vans were treated as mobility equipment instead of personal upgrades? What if public transportation was built around the assumption that disabled people are part of the public?

What if we stopped acting like disabled people should be grateful for the bare minimum?

Because disabled does not mean done.

Disabled does not mean I have nothing left to offer. It does not mean I should be hidden away. It does not mean I should spend the rest of my life fighting paperwork until I disappear. It does not mean my dreams are frivolous. It does not mean my art does not matter. It does not mean my voice does not matter.

I still write.

I still take photos.

I still love.

I still think.

I still fight.

I still want to help people feel less alone.

I still want to change the world, goddammit.

But I cannot do that if every ounce of my energy is spent begging systems to let me survive. I cannot do that if I am trapped by transportation. I cannot do that if healthcare is inaccessible. I cannot do that if every call drains me, every form overwhelms me, every delay risks my stability, and every person with privilege tells me I would do more if I cared enough.

I care.

That is why I am exhausted.

I care about living. I care about creating. I care about disabled people. I care about trans people. I care about poor people. I care about people being crushed by systems and then blamed for the shape they are in.

I care enough to keep telling the truth, even when people do not want to hear it.

People are not failing because they are lazy. They are failing because the systems around them are impossible. They are failing because the help is too little, too late, too conditional, too confusing, too inaccessible, and too exhausting to manage. They are failing because survival has become a full-time job with no paycheck, no sick days, no support staff, and no room to fall behind.

So no, I do not need another person telling me to “just” do anything.

There is no “just” here.

There is only survival under impossible weight.

And still, somehow, I am here.

Still disabled.

Still alive.

Still creating.

Still fighting.

Still with something to offer.

I do not need the world to decide whether my life is worth living.

I need the world to stop putting locked doors between me and the life I am still trying to live.

And I hope that one day, should you ever find yourself in my shoes, the world has become kinder than it is now.

I hope it is more accommodating. More accessible. More patient. More willing to listen. I hope you are not forced to beg for help, prove your pain, explain your limits, or defend your humanity to people who should have cared in the first place.

I hope the systems are easier by then.

I hope the doors are not locked.

I hope the world does not make you feel like your life is over just because you need help living it.

And I hope, if that day ever comes, you remember the people who were already here asking for that kinder world before you needed it too.