Njaimeh Mboge - Disability Campaigner

Today we publish the latest of our 5-Minute interviews celebrating Disability History Month. Today we are talking to Njaimeh Mboge who is the Chief Executive Officer and founder at Epilepsy for Black Africans and other Ethnic Minorities

1. Can I start by asking you to tell us a little about yourself?

My name is Njaimeh Mboge. I was born in the UK but raised and settled in The Gambia. In 2019, I came to the UK on maternity leave hoping to give my daughter a bit of time for the legal ban on Female Genital Mutilation (FGM) to be enforced. She was however born with multiple disabilities and home wouldn’t be supportive of her health, let alone her disabilities. With this added threat to her life, I decided to stay in the UK leaving behind my work and family.

2. Many disabled people do not consider themselves to be disabled; do you think or yourself or describe yourself as disabled?

I rarely describe myself as disabled. Though, sometimes I do feel disabled. I live with Sickle Cell, a chronic disease and I have lived with it pretty well back home even with its associated complications. It was when 2 years ago, I had sickle cell leg ulcer which brought on chronic and debilitating pain and I didn’t have any extra support to care for my child with complex and varied needs that I felt disabled. It was the first time I thought of myself as living with a disability. 

3. You are known as a disability campaigner, what inspired you or motivated you to become a campaigner

My daughter’s journey. When I didn’t see anyone that looked like our family in the information shared with me when my daughter was recommended to go on the ketogenic diet for her epilepsy. I decided to do further research online, but I found more or less the same thing - there was a lack of representation in the data. I wondered why!?

Was it the shame and stigma in the BAME communities around disability or was it because these communities were not being approached for research?

I thought maybe sharing my daughter’s story and some facts about Epilepsy and similar diseases would help reduce the shame and stigma if it was indeed just that using the experience I have gained in sickle cell advocacy over the past 15 years.

I find in the UK I tend to need more support as the weather and the stress of life in the UK doesn’t support my health. I find too that getting support for sickle cell is very hard as it is often misunderstood. Given the fact that it can sometimes be a hidden disability too means explaining how sickle cell affects one can be very hard especially to someone who has no clue about sickle cell. So I guess sometimes, it’s just easier to say nothing at all.

Also, I think the often negative connotation around disability and the barriers it create makes people shy away from identifying as someone living with one particularly if one’s disability is not visible.

4. What do you think are the biggest barriers facing disabled people and preventing them from reaching their full potential and fully participating in society?

The main ones are:

i. inadequate support

ii. difficultly of accessing support

iii. ableism 

5. Can you give any examples of barriers that you have faced? Did you overcome them? If so, how?

It often feels like when you cope well with your disability/chronic disease, like I tend do, you are also penalised for it. Assessor’s and support agencies don’t see your need for support. Not sure this is something one can overcome at an individual level, it has to do with how society in general thinks of disability and people living with or affected by disability. 

6. As a disabled person what is the biggest barrier either facing you or disabled people generally that you would like the new Government to take action on?

Inadequate support, from financial to societal to workplace/business support. Government must understand the disability price tag is real but also disabled people have much to contribute and are not “burdens” on society or on the budget. Disabled people and their families have a right to a decent life and living. A right to access and participate in society. We don’t want a life of handouts nor be made to feel that we must be ingrates to ask or even demand that we too have the same rights like everyone else. 

7. Do you think that the British media and the British public have an open and positive attitude towards disability and disabled people? If not, why not?

No. The rampant Disability Inspiration Porn used by the media and public says a lot about this. Such fuels further misconceptions about disability, disability is so diverse and two people can be disabled the same way yet their experiences are different.

Also, it strengthens ableism which further disables even more people making some to feel unable for the first time or in very big ways.  

8. Have you heard of the ‘Social Model of Disability’ and do you agree with it?

Yes and I believe while it gives a great explanation of what many people affected disability experience, on its own however it’s not enough when the aim is to fully support the individual or families affected by disability. Hence, the medical model while narrow and disempowering has its use too. When used together, support/care can be better coordinated. 

9. At the moment the ‘Assisted Dying Bill’ is receiving a lot of coverage in the media. What is your opinion of the bill? Do you agree with it? Do you have any concerns? Is a private members bill the best way or the correct way to change the law on such an important issue?

Personally as a Muslim, assisted dying is not something that’s contemplated. However, as an advocate I have the same worry around coercion either from the system or even carers and/or family members. In society where disabled people are often seen as a “burden”, wouldn’t such a bill then enable society to get rid of the burden? 

10. Finally, thank you for taking the time to answer these questions. Is there anything else you are happy to share about your life experiences as a disabled person?

No, that will be all for now