We are worried that if the Mental Capacity Bill becomes law disabled people will be stopped from making the ‘small’ day to day choices like eating the food we like and dressing in clothes we feel good in, right to what happens to our bodies together with the enjoyment of going out to work and having fun, moving home and having friends and relationships and in short having a life!

We think it is very dangerous for relatives, carers and staff, who may have a vested interest, and who already have a great amount of power over us, to be given legal powers to make decisions for us if they think we are unable to make a choice for ourselves.

We are very concerned that what the draft bill says about having access to independent advocacy, communication aids, (including interpretation and personal assistance), will not work in practice unless there is guaranteed ring-fenced funding.

We are also very concerned that the duty to follow the Code of Practice rules about supporting someone to make decisions does not extend to relatives and informal carers, despite these people having a lot of power over our lives that they could abuse. We have many examples of relatives and other carers abusing their power.

We also think that the draft bill does not give us good enough rights to complain about people misusing the powers given to them by the Act. Many disabled people find the existing health and social services complaints procedures and the Public Guardianship Office, hard or impossible to access. Also, unless our relatives have been given a special right to make choices for us by the Court of Protection, we will have no-one to complain too if they are abusing other powers given to them by the Mental Capacity Act.

The Mental Capacity Bill will make it harder for disabled people to protect our right to life if the decisions about our lives and our access to medical treatment are taken away from us and put in the hands of self appointed decision-makers. We are very worried that decisions will be made to withdraw medical treatment (which includes food and water), based on incorrect assumptions about the quality of our lives.

In short the Mental Capacity Bill does very little to strengthen our right to choice and control over our lives, and in fact has the potential to further disempower and dehumanise us.