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
The social model of disability
Haemophilia is a disability. Not because the condition is disabling in itself - 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.
Treatment is not the same as rights
The medical model has failed to address the barriers people with haemophilia face in daily life. Better drugs do not remove workplace discrimination.
We 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 lives. Those decisions were then covered up.
Rights-holders, not patients
People with haemophilia are rights-holders. Not patients to be managed. Not cases to be optimised.
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 Commit To
CRPD recognition
States that have ratified the CRPD must apply its definition of disability to people with haemophilia - explicitly, in policy and law. We are here to hold them to it.
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. We will not accept less.
Treatment by patient choice
Access to treatment must be determined by the patient, in partnership with their clinical team - not by geography, ability to pay, or commercial availability. Patients are not passive recipients of treatment decisions made for them. They are rights-holders.
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.
Cross-border, cross-condition solidarity
The rights argument belongs to everyone with an inherited bleeding disorder - haemophilia A, haemophilia B, von Willebrand disease, rare factor deficiencies. It crosses borders and it crosses conditions. That includes the broader disability rights movement. People with haemophilia belong in that movement - not as a special case seeking inclusion, but as part of it. We commit to building those connections, because the infrastructure the disability rights movement has built over decades is ours to use too.
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