Disability, Suffering, and the Reality People Don't Want to Talk About
One of the most frustrating things about discussions surrounding disability, prenatal diagnoses, and reproductive choice is how often people refuse to engage with reality. They reduce complex, painful situations to slogans, abstractions, and moral grandstanding while ignoring the people who actually have to live with the consequences.
I am disabled. I know firsthand that disability is not simply an identity or a political talking point. It is often poverty, dependence, medical trauma, isolation, uncertainty, and exhaustion. Disabled people are more likely to experience homelessness, abuse, sexual violence, depression, and suicide. Many struggle to access medication, healthcare, housing, transportation, employment, and basic independence. These are not hypothetical concerns. They are daily realities.
That does not mean disabled people are worthless. It does not mean disabled people are unloved. It does not mean disabled lives have no value. It means that suffering is real, and pretending otherwise does nothing to help the people experiencing it.
When people discuss terminating a pregnancy after a severe fetal diagnosis, they often frame the decision as selfish convenience. In reality, most families facing these decisions wanted that child. They may already have a name picked out. They may have a nursery planned. Older siblings may already be excited about a new baby. These decisions are frequently heartbreaking, complicated, and made after devastating news.
Many people also underestimate the reality of serious disabilities and medical conditions. They imagine a diagnosis as a simple label when it may involve major surgeries, feeding tubes, lifelong medical interventions, profound cognitive impairments, chronic pain, shortened life expectancy, loss of independence, or round-the-clock care. They rarely acknowledge what these realities mean not only for the child, but for parents and siblings as well.
Families can be stretched beyond their limits. Careers can end. Marriages can fail. Siblings can feel neglected. Caregivers can become physically and emotionally exhausted. Parents spend their lives wondering who will care for their child after they die. In the worst cases, stress, isolation, and lack of support can contribute to neglect, abuse, self-harm, family breakdown, or tragedy.
People are uncomfortable discussing these realities because they complicate the narrative. But refusing to acknowledge them does not make them disappear.
There is also a tendency to romanticize suffering. People speak as though enduring pain is inherently noble, virtuous, or morally elevating. I do not believe that. Suffering is not a virtue. It is not a lesson. It is not automatically meaningful simply because it exists.
A newborn struggling to breathe because their lungs never developed is not experiencing a noble death. A child trapped in a body that cannot move or communicate is not automatically benefiting from that suffering. A family collapsing under impossible circumstances is not made stronger simply because they endured them.
Sometimes the most compassionate response is not to prolong suffering at all costs.
We recognize this instinct elsewhere. When a beloved animal is dying and in pain with no hope of recovery, we call euthanasia a mercy. We understand that love sometimes means letting go rather than demanding more suffering from someone we care about. We recognize that there comes a point where keeping someone alive is no longer the same thing as helping them.
My perspective is rooted in compassion, not cruelty. If I knew a child would experience nothing but profound suffering, pain, and dependency from the moment they entered the world, I would struggle to justify bringing them into it. If a family decides they do not have the physical, emotional, or financial resources necessary to care for a severely disabled child, I do not view that as selfishness. I view it as an honest assessment of reality.
Likewise, I believe children deserve to be born into homes where they are wanted, supported, and cared for. I believe reproductive decisions are deeply personal and often shaped by circumstances outsiders cannot fully understand. The people making those decisions are usually the ones who will live with the consequences for the rest of their lives.
What frustrates me most is that many of the people condemning these decisions never have to witness the outcomes of the policies they advocate for. They are not there when a child suffers. They are not there when parents burn out. They are not there when families fall into poverty. They are not there when people lose access to healthcare, housing, or support. They are not there for the years and decades that follow.
The people who carry those burdens are.
And that is why these conversations require honesty, not romanticism. They require compassion, not judgment. Most of all, they require listening to the people who actually live with disability and its consequences instead of treating their experiences as inconvenient complications to a moral argument.
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