Mission Statement
The framing of haemophilia as a purely medical condition is not neutral. It is political. And it has consequences.
Part I
What We Believe
Haemophilia is a disability. Not because the condition is disabling in itself, but because society is structured in ways that hinder the full participation of people who live with it. That is the social model. We apply it.
The medical model of care — in which the goal is treatment and management, not rights — has failed to address the barriers people with haemophilia face in daily life. Better drugs do not remove workplace discrimination.
People with haemophilia belong in the disability rights movement. The movement's tools — legal frameworks, political organising, collective identity — are ours to use.
The infected blood scandal was not a tragedy. It was a series of decisions made by people in authority who prioritised cost and convenience over the lives of people with haemophilia. Those decisions were then covered up.
People with haemophilia are rights-holders. Not patients to be managed. Not cases to be optimised. Rights-holders.
Part II
What We Reject
The medical model as a complete frame
Clinical management of haemophilia is necessary. It is not sufficient. Treatment without rights leaves barriers in place.
The word 'patient' as a primary identity
We are people with haemophilia. We are disabled people. We are not primarily patients. The patient identity depoliticises. It replaces rights with compliance.
Internalised ableism in the community
The belief that haemophilia is not serious enough to claim disability identity, or that claiming it is inappropriate, is a product of the medical frame. It is not neutral. It works against us.
Optional CRPD compliance
The UN Convention on the Rights of Persons with Disabilities is a binding legal instrument. State obligations under it are not optional extras. They apply to people with haemophilia.
Delayed justice
People who were harmed by contaminated blood products have waited forty years. Some are still waiting. Justice delayed is not justice. We reject the normalisation of that delay.
Part III
To People with Haemophilia
You have probably been told that haemophilia is a medical condition, that it has nothing to do with disability, and that claiming that identity would be inappropriate or presumptuous. You were told wrong.
The framing you received was constructed. It was constructed by systems that benefited from keeping haemophilia in the clinical space — where rights don't apply and obligations don't follow.
In a community survey, 88% of people with haemophilia said they had experienced barriers in daily life that they attributed to living with haemophilia. Not to the condition. To the world around it.
Claiming the disability label is not about severity. It is not about competition with other disabled people. It is about power. The disability rights movement has legal tools, political infrastructure, and a forty-year track record of winning things. You are entitled to those tools.
We are not asking you to identify differently. We are asking you to consider what becomes possible when you do.
Part IV
What We Demand
CRPD recognition
States that have ratified the CRPD must apply its definition of disability to people with haemophilia — explicitly, in policy and law.
Barrier removal
Employers, schools, and health systems must be required to make reasonable adjustments for people with haemophilia. Not as best practice. As legal obligation.
Treatment by clinical need
Access to treatment must be based on clinical need, not geography, ability to pay, or commercial availability. This is a rights issue, not a supply chain issue.
Full justice for the infected blood scandal
All surviving victims and bereaved families must receive full compensation without further delay. Those responsible must be held to account. The full record must be disclosed.
Psychological support as standard
Given documented rates of depression and anxiety 1.74–2.45× the general population, psychological support must be integrated as a standard component of haemophilia care — not an afterthought.
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