抄録
北海道頸髄損傷者連絡会では,本道の重度脊髄障害者を対象に複数の媒体を利用してのコミュニケーションによる情報の集積と発信,対面的交流に基づく体験的知識の共有を目的とする相互支援活動を行ってきた。援助者自身に直接還元される生活支援サービスや対価サービスの提供などを伴わない純粋なセルフヘルプ・グループの場合は,援助者利得が曖昧で,その確約もない。特に重度身体障害者を対象とし,当事者自身によって自律した運営がなされるセルフヘルプ・グループは,極めて脆弱な基盤の上で不安定な活動を続けているのが現状である。北海道頸髄損傷者連絡会の活動を始めて10年が経過したが,対象者の障害特性,対象エリア,リーダーや役職及びメンバーの固定化,オンライン・ネットワーク化,専門職との関係などにおいて多くの問題と課題を抱えている。
The Hokkaido Association of the Quadriplegics has been working on mutual aid of patients with severe spinal cord lesion. Its purposes are gathering and sending out information through multiple media communication, and sharing knowledge acquired through experience by face-to-face exchange. As for life support services in which profit is supposed to be directly returned to aidants and absolute self-help services in which compensational services and other compensation are not accompanied with, profit to aidants is noncommittal and unassured. Particularly, the Self-help Group that is intended for severely disabled persons and independently operated by themselves is unstably running on extremely fragile basis, which is the fact now. Ten years has past since the association started its activity. It still bears a lot of issues and problems including type of disability of persons to be covered, area to be covered, fixing the leader and function of executive staffs, settling executive members, on-line networking and relations with professionals.
