THIS MESS WE’RE IN – IT’S OUR EVERYDAY REALITY

Pay attention to what you’re feeling right now.

Take a moment to take it all in and really reflect on your thoughts and the cause of all of the anxiety. Stay calm and FEEL IT.

Isolated.

Restricted.

Trapped

Scared.

Angry.

Uncertain.

Unemployed.

Assigned inappropriate schoolwork.

No resources.

Inadequate medical care.

Lack of medication.

Shut out of bars, clubs, schools, stores, movie theatres.

These feelings, these restrictions, these are issues that individuals with disabilities and their families face EVERY SINGLE DAY.

This is our life. This is how we feel when:

  • Businesses don’t have accessible entrances.
  • Bathrooms don’t have appropriate facilities.
  • “Friends” don’t invite us to parties.
  • Schools don’t accommodate our work.
  • Schools don’t provide appropriate supports.
  • We aren’t allowed to attend our neighborhood school or general education classroom
  • We don’t get proper accommodations to do our jobs.
  • Individuals are forced to choose between working and accessing medical care.
  • Parents are forced leave their jobs to care for their child.
  • Parents take unpaid leave to attend IEP meetings or medical appointments for their child
  • Families are denied Medicaid waivers and placed on decades-long waiting lists.
  • Individuals can’t afford to make their own home accessible.
  • Individuals can’t use public transportation.
  • Families can’t purchase an accessible vehicle.
  • Able-bodied people park in disabled spaces.
  • Insurance denies coverage for medically necessary treatments.
  • Doctors deny a life-saving organ transplant because someone else matters more.
  • Doctors deny treatment because you aren’t worth it.
  • We can’t hire support staff because Medicaid doesn’t pay a living wage.
  • Summer camps don’t accept kids like “that.”
  • People avoid coming near you because you look different.
  • Parents don’t let their kid play with your kid.
  • Clubs and sports don’t offer any adaptive programs.
  • You avoid public spaces because you are medically fragile.
  • The general public refuses to take other’s needs into account.

The very irony of this virus is that we let it spiral out of control because “it only affects the elderly and people with underlying issues (which is the majority of people with disabilities).” We didn’t take it seriously because we, as a society, care less about these populations. In the grand scheme of things, these lives are less valuable. Even now, people pause when we see a report that it might infect “the healthy;” it’s not until those reports come out that it matters to them. An 85-year-old grandmother – it was her time. A boy with respiratory issues and immune system deficiency – he was sick anyway. But we start to stay home when we realize it could be “healthy, young” people.

Now that we’re home and have time to reflect. Press pause. Take time to feel all of these feelings. Practice some empathy knowing that this “outrageous” way that we’re living right now is how many of your fellow humans live every day. And carry this lesson with yourself as we move forward from this crisis.

And for individuals with disabilities and their families, remember, we may be more vulnerable right now, but we’re also more prepared.

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