A/HRC/43/41 must be established requiring collection and reporting of detailed information about each request and intervention for assistance in dying. E. Participation in decision-making 71. States must closely consult with and actively involve persons with disabilities and their representative organizations, including children and women with disabilities, in the adoption, implementation and evaluation of legislation and policies about medical and scientific research and experimentation, prenatal screening, assisted dying and other issues directly or indirectly related to the value of the lives of persons with disabilities. Girls, boys and adolescents with disabilities, even the youngest, are the experts on their own lives and thus also have the right to participate in decision-making and to be provided with disabilityand age-appropriate support for that purpose (see A/72/133). 72. States must also promote the participation of persons with disabilities in the work of national bioethics committees. For example, in Sweden an expert nominated by the Swedish Disability Rights Federation represents persons with disabilities in the National Council on Medical Ethics. While bioethical debates are an important tool for critical reflection about ethical conflicts caused by science and medicine, States must primarily take into consideration the rights and concerns of persons with disabilities when considering legislation and policies at the intersection of bioethics and disability. VIII. Conclusions and recommendations 73. The hegemony of ableism in society has perpetuated the idea that living with a disability is a life not worth living. There is a deep-rooted belief, carved with fear, stigma and ignorance, that persons with disabilities cannot enjoy a fulfilling life, that their lives are incomplete and unfortunate, and that they cannot attain a good quality of life. Such ableist ways of thinking, reinforced by the medical model, have privileged prevention and cure over all other responses to disability, leaving persons with disabilities with limited opportunities to be included and participate in society. While the eugenic programmes of the late nineteenth and early twentieth centuries have disappeared, eugenic aspirations persist in current debates related to medical and scientific practice concerning disability, such as prevention, normalizing therapies and assisted dying. Notwithstanding all the progress achieved over recent decades concerning the rights of persons with disabilities, embracing disability as a positive aspect of humanity remains the final frontier to be conquered. 74. Life with a disability is a life worth living equal to others. Every person has a unique set of unrepeatable characteristics and experiences that make them irreplaceable and valuable. The lives of persons with disabilities are human lives and, consequently, endowed with inherent dignity. Persons with disabilities can live fulfilling lives and enjoy what gives life meaning. They share the same aspirations as everyone else, such as making friends, getting a job, living on their own, starting a family or accomplishing their dreams. Persons with disabilities bring talent, diversity and richness to their communities. While they may face more barriers in achieving their aspirations, their endeavours and accomplishments contribute to building more inclusive and diverse societies for the benefit of all. 75. Given the cultural and societal challenges posed by ableism, neither awarenessraising programmes nor the generalization of anti-discrimination measures will alone suffice. What is needed is a cultural transformation of the way society relates to the difference of disability. That is a commitment to the recognition of persons with disabilities as equals on all terms, with the same rights and opportunities as everyone else in society. It is thus vital to reduce the distance between society’s views of disability and the narratives of those living with a disability. The devaluation of the lives of persons with disabilities comes partly from a historic inability to listen to what persons with disabilities have to say about themselves. 76. The Special Rapporteur makes the following recommendations to States, with the aim of assisting them in developing and implementing reforms that will lead to the recognition and acceptance of disability as part of human diversity: 17