Tag: boundaries

Can I or Should I? Living With Disability, Risk, and Hard Choices

A hostess at the hostess stand of a fancy restaurant is talking on the phone, answering a question. Her answer is, "Yes, we're accessible, once you get past the front steps." There are three steps patrons must get up to eat in the restaurant. Some able-bodies people don't understand that isn't really accessible at all.

Being disabled doesn’t always mean I can’t do something. Sometimes I can but doing it would come with a cost that more able-bodied people do not see and do not understand.

The truth is this; able-bodied people rarely find themselves in a position where they have to choose between doing something they really want to do and incurring long-term pain or even an injury that could put them in the hospital.  For people with life-limiting conditions, we have to face this option often.

So, the question isn’t can I, it’s should I?  And most of the time, the honest answer is no.

Will I sometimes do it anyway? Yes. But that choice has to be rare and made with caution, because even when I can do something, I will still pay for it later with pain, fatigue, soreness, a flare, or even a long-term injury.

Sometimes the situation truly warrants that cost. If a child were injured at the bottom of a stairway, and there was no one else to help,  I would take that risk without hesitation, even knowing it could hurt me or cause me to fall. Some moments have a moral component that calls for action despite the risk.   

But that is a rare exception.  Something like visiting a new nightclub, eating at a fabulous restaurant, or any kind of optional outing that requires me to risk a fall or a broken bone is a situation where I can’t afford to take the risk. In those cases, the cost is not reasonable, and saying no is the responsible choice.

Living with a life-limiting condition means constantly weighing the risks against the consequences. Every yes has consequences.  This is not about fear or unwillingness. It is about reasoning, responsibility, and life experience. When I say no, I am not being difficult or dramatic. I am making a deliberate choice to protect my health, my safety, and my ability to function tomorrow and beyond. That is not weakness. It is wisdom learned the hard way.

Here are more reflections on living with a disability, chronic illness, or a life-limiting condition.

When Change Sneaks Up on You – Jan Mariet’s A Day in the Life

My Story Isn’t Public Property  – Jan Mariet’s A Day in the Life

Designer Shoes and Disability: Why Judging Others Is Obscene – Jan Mariet’s A Day in the Life

Disabled People Don’t Need Permission to Enjoy Life – Jan Mariet’s A Day in the Life

We’ve Been Gaslit So Long, We Gaslight Ourselves – Jan Mariet’s A Day in the Life.

How to Ruin Your Kid in 20 Easy Steps

This image has a starburst background and says, "How to ruin your kid in 20 easy steps. Just follow this guide and you'll have a 30-year-old who can't fill out a job application and still relies on you for video game subscriptions.
  1. Always blame the teacher, coach, or other people whenever your child gets in trouble, so they never learn to take responsibility.
  2. Believe your child, without question, even when all evidence shows differently, so they never learn honesty or accountability.
  3. Do everything for them, so they never learn how to do things on their own.
  4. Fight all their battles, so they never learn to express themselves clearly or stand up for what they believe in.
  5. Give them rewards for nothing, so they learn to expect praise without effort.
  6. Give them everything they want, so they never learn to choose wisely or work hard to earn something.
  7. Ignore your child’s bad behavior, or excuse it with “they’re just tired” or “kids will be kids,” so they never learn right from wrong.
  8. Let your partner treat you poorly in front of them, so they learn that abuse, disrespect, threats, and violence are a normal part of a “loving” relationship.
  9. Micromanage their every move, so they never learn independence or confidence.
  10. Never set boundaries, and let them make the rules, so they never learn respect for authority or limits.
  11. When you do give them a consequence, let them whine until you give in, so they never learn that rules matter.
  12. Never let them fail, so they never learn resilience or how to recover from setbacks.
  13. Protect them from uncomfortable feelings like disappointment, boredom, or frustration, so they never learn how to cope.
  14. Protect them from consequences, even when they deserve them, so they never learn that actions have results.
  15. Put their happiness above all else, even if it means letting them disrespect others, so they never learn empathy or consideration.
  16. Share adult burdens with them, like your financial, emotional, or relationship problems, so they never learn healthy boundaries.
  17. Solve all their problems for them, so they never learn problem-solving skills or perseverance.
  18. Treat them like your best friend instead of your child, so they never learn to respect authority or feel secure.
  19. Compare them to other kids, so they never learn to value their own unique strengths.
  20. Never apologize when you’re wrong, so they never learn humility or how to repair relationships.

Just follow these 20 steps, and you’ll have a 30-year-old who can’t fill out a job application and still relies on you for video game subscriptions.

Here are some other articles you might enjoy:

When the Table Was Full – Jan Mariet’s A Day in the Life

The Good Old Days — But for Whom?  When Schools Changed: The Forgotten Truth About Inclusion and Exclusion fore special education % – Jan Mariet’s A Day in the Life

Skirts, Sneakers, & Sports – Jan Mariet’s A Day in the Life

“Life Unworthy of Living” Response – Jan Mariet’s A Day in the Life