Council About Us Without Us - Dilmurad Yusupov
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Council About Us Without Us

Illustration by David Werner, 1998, “Nothing About Us Without Us: Developing Innovative Technologies For, By and With Disabled Persons”.

Does the recently established Interagency Council on the Affairs of Persons with Disabilities represent the rights and interests of people with disabilities and their organisations? Together with a chairperson of the Association of Disabled People of Uzbekistan, Oybek Isakov, we made a joint analysis of the Council composition and advocated for its expansion by including disabled people’s organisations (DPOs) and specialised NGOs.

On April 29, the Cabinet of Ministers of Uzbekistan approved a resolution “On organising the activities of the Interagency Council on the Affairs of Persons with Disabilities.” The creation of such a council was provided for by Article 15 of the new law “On the rights of persons with disabilities”, which entered into force on January 16, 2021.

The main purpose of the Interagency Council is to coordinate the activities of various state bodies and local self-government bodies that implement state policy in the field of ensuring the rights of persons with disabilities.

Article 15 of the law “On the rights of persons with disabilities” also states that the council shall include not only representatives of ministries and departments, but also representatives of non-governmental non-profit organisations (NGOs), including public associations of people with disabilities.

The idea of ​​creating an Interagency Council originally came from the Association of Disabled People of Uzbekistan when the draft law was being prepared. The chairperson of the association and lawyer Oybek Isakov notes that the draft law specifically included an article on the creation of a council based on the provisions of Article 33 – National implementation and monitoring of the UN Convention on the Rights of Persons with Disabilities (CRPD).

On May 18, 2021, the Legislative Chamber of the Oliy Majlis (Parliament) passed the Law “On the Ratification of the Convention on the Rights of Persons with Disabilities (New York, December 13, 2006)”, and the Senate must now approve the document. Article 33 of the CRPD sets out a coordinating mechanism for implementing and monitoring the implementation of the Convention by the state party.

The third paragraph of Article 33 emphasises the importance of ensuring the full participation of civil society, in particular persons with disabilities and their representative organisations, in monitoring the implementation of the Convention.

However, the composition of the newly established Interagency Council for Persons with Disabilities under the Cabinet of Ministers of the Republic of Uzbekistan includes only one NGO – the Uzbek Society of Disabled People (UzOI). Obviously, one NGO cannot express the interests and rights of different categories of persons with disabilities – blind, deaf and hard of hearing, children and youth with disabilities, girls and women with disabilities, Paralympians, children and adults with rare diseases and other groups.

UzOI expresses mainly the interests of adults with physical impairments, with disorders of the musculoskeletal system and, of course, cannot fully express the interests of persons with other forms of impairments. Moreover, not a single public association of people with disabilities or NGOs gave authority to this organisation to represent their rights and interests in the Interagency Council.

The remaining 15 members of the newly established Interagency Council are representatives of various ministries and departments. There is only one woman on the council – Minister of Preschool Education Agrippina Shin. In this regard, the question of the representativeness of the Interagency Council not only based on disability but also on gender is questioned. The members of the Interagency Council include:

  1. B. A. Musaev – Deputy Prime Minister for Social Development (chairperson of the Interagency Council)
  2. A. M. Khadjibaev – Minister of Healthcare
  3. R. T. Mamatov – Minister for Mahalla and Family Affairs
  4. N. M. Khusanov – Minister of Employment and Labour Relations
  5. A. X. Toshkulov – Minister of Higher and Secondary Special Education
  6. Sh. Kh. Shermatov – Minister of Public Education
  7. A. V. Shin – Minister of Preschool Education
  8. O. A. Nazarbekov – Minister of Culuture
  9. Sh. M. Sadikov – Minister for the Development of Information Technologies and Communications
  10. I. R. Makhkamov – Minister of Transport
  11. S. Kh. Kholkhujaev – First Deputy Minister of Economic Development and Poverty Reduction
  12. A. U. Akkulov – Deputy Minister of Tourism and Sport
  13. J. I. Abruev – Deputy Minister of Finance
  14. M. M. Ikramov – Deputy Minister of Justice
  15. K. Q. Abdullaev – Chairperson of the Uzbek Society of Disabled People (by agreement)
  16. A. K. Inakov – Director of the Agency for the Development of Medical and Social Services under the Cabinet of Minister of the Republic of Uzbekistan, (secretary of the Interagency Council)

 

We wished our best, you know the rest

The draft law of the Association of Persons with Disabilities of Uzbekistan was taken as the basis for the new law “On the Rights of Persons with Disabilities”. It included about 60% of the Association’s proposals in the final version of the law. Initially, in Article 15 of the draft law, the association included the requirement to form the composition of the Interagency Council on an equal footing – 50% of the members had to be representatives of NGOs and public associations of persons with disabilities, and 50% – representatives of ministries and departments. However, the final version of the law “On the rights of persons with disabilities” excluded this requirement.

The draft resolution “On organising the activities of the Interdepartmental Council on the Affairs of Persons with Disabilities” provided for the inclusion of 20 members, including the heads of 5 public associations of persons with disabilities – the Association of Disabled People of Uzbekistan, the Society of the Blind, the Society of the Deaf, the National Association of Business Women with Disabilities and the Uzbek Society of Disabled People.

The draft resolution “On the organization of the activities of the Interagency Council for Persons with Disabilities” was approved by five NGOs and endorsed with the signatures of their representatives.

 

However, due to unknown reasons, 4 DPOs were excluded from the Interagency Council approved by the government. Importantly, an equal ratio of representatives of civil society and state bodies is an important requirement for the implementation of effective inter-agency coordination not only within the government bodies but also for the establishment of a constructive dialogue with civil society institutions.

The active participation of persons with disabilities themselves and their organisations in the Interagency Council would ensure the implementation of impartial monitoring and public control over the implementation of national legislation on the rights of persons with disabilities and the provisions of the CRPD after its expected ratification this year.

The Interagency Council for Persons with Disabilities should have become a platform where, within the framework of social partnership, a direct dialogue between government agencies and public associations of persons with disabilities and NGOs carrying out socially significant activities in the field of ensuring the rights of persons with disabilities.

In a resolution dated March 3, 2021, President Shavkat Mirziyoyev repeatedly stressed the need to enhance the role of NGOs and other civil society institutions “as active participants and partners in the reforms being implemented in the country.” A presidential decree of March 4, 2021, required that at least 50% of NGO representatives be included in public councils functioning under government agencies.

It’s never too late to amend the mistakes.

One NGO and 15 ministries and departments included in the Interagency Council for Persons with Disabilities cannot express the interests of all persons with various forms of impairments simply because they do not have enough information, experience in working on a set of tasks related to each specific group of persons with disabilities.

The Association of Persons with Disabilities proposes to amends the mistakes and include the following public associations of persons with disabilities and NGOs in various areas of their activities in the Interagency Council:

  1. Association of Disabled people of Uzbekistan
  2. Society of the Blind of Uzbekistan
  3. Society of the Deaf of Uzbekistan
  4. Republican Center for Social Adaptation of Children (RCSAD)
  5. Centre for Children and Youth with Disabilities under the Youth Union of Uzbekistan
  6. National Association of Business Women with Disabilities of Uzbekistan
  7. National Paralympic Committee
  8. Cancer Society of Uzbekistan
  9. International Public Foundation “Zamin”
  10. Charitable Public Foundation “Ezgu Amal”
  11. Other public associations of persons with disabilities and NGOs working in the field of ensuring the rights of children and adults with disabilities

 

The Association of Disabled People of Uzbekistan was established on February 21, 2018. At present, it unites 30 NGOs and public organisations of disabled people operating both at the republican and regional levels. There are 11 regional branches of the association across the country.

In 2018, the Association of Persons with Disabilities of Uzbekistan was registered with the Committee on Economic and Social Rights at the UN headquarters in New York and received a consultative member status at ECOSOC. The Association of Disabled People of Uzbekistan is also a member of the Disabled People’s International (DPI).

The main goal of the Association is to unite efforts and coordinate the actions of DPOs and NGOs in ensuring the rights of persons with disabilities and creating an inclusive society through the implementation of the CRPD. To achieve this goal, the Association regularly conducts public control over the implementation of the requirements of national legislation in the field of protecting the rights of persons with disabilities and actively participates in the legislative process.

The council about us shouldn’t work without us!

Failure to include the Association of Persons with Disabilities of Uzbekistan and other civil society representatives will significantly worsen the effectiveness of interagency coordination. It will contradict the principle of the international disability movement and the CRPD: “Nothing about us without us.” The successful implementation of the norms and provisions of the CRPD also depends on this.

Article 11 of the Law “On the Rights of Persons with Disabilities” notes that one of the main directions of state policy in the field of disability and inclusive development is “the involvement of persons with disabilities in the life of society and the state”, as well as “the development of cooperation between state bodies and non-state non-profit organisations in the field of ensuring the rights of persons with disabilities ”.

Article 15 of the law implies the inclusion of representatives (in the plural) of NGOs and public associations of persons with disabilities in the composition of the Interagency Council on the Affairs of Persons with Disabilities. In other words, not only one organisation of disabled people should be involved in the activities of the Interagency Council – there should be many more DPOs and NGOs!

The tasks assigned to the Interagency Council for the coordination of the activities of state bodies and local self-government bodies, the implementation of rehabilitation programmes, social protection and ensuring the rights of people with disabilities, the promotion of inclusive education and employment, the creation of an accessible environment are impossible without ensuring the direct participation and involvement of persons with disabilities and their representing organisations.

We have been heard!

On May 28, 2021, Oybek Isakov received a letter from the Agency for Development of Medical and Social Services of the Republic of Uzbekistan signed by its director Alisher Inakov. Before, this Agency functioned under the Ministry of Healthcare, but on March 26, 2021, it was transferred and now accountable to the Cabinet of Ministers of Uzbekistan. The Agency is an authorised state body in providing medical and social services to the elderly, persons with disabilities and other groups of the population in need of social protection.

In the letter, Mr Inakov pointed out that the Uzbek Society of Disabled People was included as a member of the Interagency Council and mentioned Article 14 of the Interagency Council Charter:

“Depending on the nature of the issues under consideration at the meeting of the Interagency Council, heads and experts of other organisations that are not members of the Interagency Council may be invited.”

However, the same Article 14 states that “Decisions of the Interagency Council shall be adopted by a simple majority of votes of the members of the Interagency Council present at the meeting.” In other words, those present at the meeting with an observer status will not be able to vote. But the Association of Disabled People of Uzbekistan, other DPOs and NGOs are demanding their voices to be counted in the decision-making processes of the Interagency Council.

The Agency for Development of Medical and Social Services also informed that “the composition of the Council is currently being updated by working out proposals to increase the number of public associations of persons with disabilities to be included in the Council and including this issue in the agenda of the Council meeting”. Moreover, Mr Inakov mentioned that the public council established under the Agency included 7 representatives of DPOs, including Oybek Isakov as the Chairperson of the Association of Disabled People of Uzbekistan.

Finally, the letter included that the meetings of the Interagency Council are scheduled to be convened at least once a quarter. It is planned to improve the protection of the rights of persons with disabilities and take measures to resolve issues in this regard. At the same time, the Agency is open to any suggestions and recommendations made according to the prescribed procedures.

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