The Argument
It is not the condition that disables people with haemophilia.
It is the world they are forced to navigate. The missed appointments. The adjustments that are never made. The workplaces that don't accommodate them. The system that treats them as patients rather than rights-holders.
Two ways of looking at the same thing
The medical model
Haemophilia is a condition that causes disability. The solution is better treatment. The problem is located in the body.
Under this model, the task is to fix or manage the person. Barriers are inevitable consequences of the condition, not choices society has made.
The social model
Haemophilia is an impairment. Disability is what happens when society fails to accommodate it. The problem is located in the world — not the person.
Under this model, the task is to remove barriers. That is not a medical question. It is a political and legal one.
What the barriers look like
Work & Employment
- Inflexible working hours that conflict with treatment schedules
- Employers unwilling to make reasonable adjustments
- Disclosure pressure and discrimination risk
- Lost income from joint bleeds and recovery time
Healthcare
- Treatment centres located far from where people live
- Haematology appointments not treated as medical necessity
- Insurance barriers in countries without universal coverage
- Psychological support not offered as standard
Education
- Schools without trained staff or accessible facilities
- No recognition of haemophilia as a disability for exam adjustments
- Children missing school without support plans
- Transition to adult care without educational continuity
Daily Life
- Built environments not designed for people with joint damage
- Sports and physical activity presented as forbidden rather than adapted
- Social isolation from managing a hidden condition
- Financial burden of managing treatment around work
What barriers cost people
The impact of unaddressed barriers is measurable. Published research documents the consequences across mental health, employment, and quality of life.
2.45×
More likely to experience depression
People with haemophilia are 2.45 times more likely to report depression than the general population.
Source: Srivastava et al., Haemophilia, 2013
1.74×
More likely to experience anxiety
People with haemophilia are 1.74 times more likely to report anxiety than the general population.
Source: Srivastava et al., Haemophilia, 2013
↓ 30%
Reduction in work productivity
Adults with severe haemophilia report significantly reduced work productivity, with studies documenting absenteeism and presenteeism rates substantially above the general population average.
Source: World Federation of Hemophilia Global Survey; Miners et al., Haemophilia, 2011
53%
Report barriers to employment
More than half of adults with haemophilia in a European study reported that their condition had negatively affected their employment status, career progression, or choice of occupation.
Source: Lindvall et al., Haemophilia, 2012
These outcomes are not caused by haemophilia. They are caused by a world that has not removed the barriers haemophilia creates. That is the distinction the social model makes — and it is the distinction that opens the door to legal remedy.
The political case
836,000 people worldwide live with haemophilia. The global disability movement — which has secured legislative change across dozens of countries — represents 1.3 billion people. Haemophilia has rarely been part of that movement.
That is not because haemophilia doesn't qualify. It is because the condition has been managed medically, by pharmaceutical companies and clinical systems, rather than politically. The result is a community without the infrastructure that rights campaigns require.
What the law says →The case in slides
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The medical model says haemophilia causes disability.
The social model says society's barriers do.
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